2019 and the path ahead

Last week brought another big appointment, my follow up from surgery and I hoped my result for chemotherapy. Whilst it brought good news re surgery, all margins were clear and no more surgery would be needed, my surgeon did not have any information about chemo as it is dealt with by another consultant at another hospital. He was helpful and suggested I contact the consultant’s secretary, which I did. I was later told that test results are not discussed on the phone. I would have to wait until my appointment, which was a week later. I asked if the appointment could be brought forward and was told they would get back in touch.

I was feeling quite frustrated, the doctor has my results but I, the patient, don’t. I had been waiting for nine weeks for clarification of my treatment and my patience was running out. These big appointments don’t get any easier, the roller coaster is still at full throttle… so yes I had a melt down. Not on the phone but with G..Tears flowed and I think it was just what I needed, as I felt much better after. All that pent up frustration flooded out. as they say, better in than out!

Monday I had a phone call, could I come in for 3.40 that day. So having agreed I then found a friend, who very kindly stepped up as G was in Birmingham. This was not an appointment to do solo. I was convinced that chemo was my path, why else did he want to see me face to face…they also weighed and measured me before I saw him. So when given my the paper with my test results, I did a double take.. 17 that meant chemotherapy would give me less than 1% benefit. Wow! I was told I could have it if I wanted to … funnily enough I declined. Why would I do that if there was less than 1% benefit?

Suddenly, the path was clear… I had clarity. My active treatment will finish before Easter. I felt like I had suddenly been pinged back into normality. No more days or weeks at a time. I can make plans, I can book a holiday, Eleanor can have her birthday party whenever she wants to. I can go back to university after Easter, all being well. There was also a tremendous sense of relief, radiotherapy is a known quantity for me and I was worried about chemotherapy and all of that worry just fell away.

The weekend in between I went off to London, many months ago a friend and I had booked tickets to see Les Mis as a birthday treat. This could not have been timed better, getting away was just the break I needed. I had excellent company, thoroughly enjoyed the show (I loved every minute) and just had a wonderful time leaving my worries behind.

So next stop radiotherapy but in the meantime I have a little spring in my step and a smile on my face. I think I dodged a bullet there.

Three things I am grateful for

  • Passing my Stats assignment with a good grade.
  • the lovely cards, flowers and such thoughtful presents I had for my birthday
  • seeing Les Mis and my trip to London

 

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A New Year

A new year can bring hope, optimism and for me usually some plans. The start to this year is somewhat different. Unable to make any long term plans at the start, this year may well have to be taken in bite size chunks. So the beginning of this year feels a little strange.

First hurdle was my op, which has been my fifth operation for cancer in 15 months. All went well, I recovered really well and am feeling quite perky. Fingers crossed, that is surgery finished! Next hurdle will be my follow up when hopefully at long last I will have some clarification over my treatment.

In the meantime, I have a birthday, my 50th …whilst I will celebrate the day quietly with G and the girls. I hope to celebrate with friends and G a little later in the month. I have a theatre trip to Les Mis in London booked. Other plans are on hold for now but days out and trips with friends will happen, just a bit later than planned. I am ok, I think, with being 50, I still feel young at heart and this cancer is hopefully just a blip.

I am fairly sure no treatment will start before February so I will make the most of being free and well in January. This means time to catch up with friends and get out and about. January is not usually my favourite of months but this year I am determined to enjoy it.

Three things I am grateful for

  • We all had a lovely Christmas, it was so relaxing and enjoyable
  • My new Twitter friends who I met through the breast cancer community. We are at similar stages and the support and friendship with friends I have yet to meet in real life has been just lovely.
  • Today the sun is shining, it is cold and frosty but with a blue sky, that pale blue winter sky, a reminder that winter can be beautiful too.

Twas the week before Christmas

So another week passes and another appointment, a big one. Follow up from surgery was always going to be key in providing more information for my treatment. We met with my Breast Nurse, Helen., who started  with the good news that my lymph nodes are clear so my cancer is contained. The tumour was bigger than originally thought, 33mm …not 20mm and the surgeon has not got a clear cancer free margin so more surgery is needed which will happen in the New Year. Due to the tumour size, they want to see if chemo would be advantageous so another test is needed. This is done in the US and is called the Oncotest. As chemo is expensive, the NHS feels it is worthwhile to see if chemo is really beneficial making this test very useful. We hope to have the result by my next follow up after  surgery No2.

So, the following day , Friday, we were despatched to the BRI (Bristol Royal Infirmary, to those of you who are not local) to their Oncology department. As I parked in the car park and walked out turning right  (not left towards the university) I felt a great sense of deja vu, walking up the hill to Oncology. It felt like Groundhog Day, back to the BRI where only this year I had completed 5 weeks (25 sessions) of radiotherapy.

G and I waited, finally at 5pm our consultant, Dr Mohan was free. He had a kind face and apologised for keeping us waiting. I instantly liked him. He spent almost an hour with us, asking lots of questions as well as asking me if I had any questions. He quickly established from my notes that I had been there before. He looked at me holistically wanting to know all about me. After establishing a few facts, he said I should be referred to genetics for testing, something I had mentioned with my other consultant who had been very dismissive.  If I do have chemo, I felt very reassured by him and feel I will be in very good hands under his care.To give us such time and care, on a Friday evening, the Friday before Christmas was quite remarkable.

So it is nearly Christmas, G has finished work, the girls have finished school after what seems eternity and I am really looking forward to our time together.

And so, Happy Christmas to you all too, thank you for all your good wishes and here’s hoping 2019 is a happy, healthy and peaceful year for us all!

Love G xx

Three things I am grateful for

  • School holidays, lazy mornings here we come!
  • Winter Solstice – the shortest day has passed and we can look forward to Spring
  • Christmas Time, time with the girls and G, good food and a well deserved rest for everyone!

Surgery

Last Wednesday I had my surgery, a similar op but this time my lymph nodes were checked. I was late going in as I was last on the list for that day,  but somebody has to be last and this time it was me. Again the NHS were great, staff friendly, kind and apologetic (for something frankly behind their control) Surgeon seemed to think all went well, we will know more at the post op consultation.

This time, I felt pretty rubbish post op. I felt sick and quite peculiar, I think that may have been down to my low blood pressure. That first cup of tea still tasted good though! Also my pain relief was not entirely under control. So it was decided I should not go home Wednesday evening for which I was very grateful as I did feel quite out of sorts. I did feel better by midnight and so came home first thing Thursday just in time to see the girls before they left school.

Recovery has been a bit slower this time. In fairness I bounced back very quickly last October and had no pain at all. This time it is taking a little longer, some may say I am impatient but I do still feel light headed and uncomfortable at times. And boy have I slept!

Today, it was dry enough to get out so we headed to Dyrham Park NT where we had some much needed fresh air and exercise. It was great as we also had the added delight of Christmas Folk carols. I feel so much better for getting out.

Gareth, myself and the girls have been really touched by the kindness people have shown us. Beautiful meals brought to us, flowers, gifts and lots and lots of good wishes. So a big thank you to you all, Team George is looking pretty epic right now.

So from  tomorrow, back to completing my assignment, nearly there! Last week of term, thank goodness and hopefully a bit more clarity on next steps. One hurdle down …what will be next?

Three things I am grateful for

  1. Christmas has arrived at No. 99, the decorations  and tree are now up (we had a few complications) Our  home looks lovely
  2. The beautiful singing at Dyrham today, it was  really uplifting.
  3. We are off out to celebrate Eleanor’s certificate for writing, both girls still working hard,( Carys has had and still has lots of tests) which is to be applauded at the end of a long term!

Another week

I finally heard about my test results. We were en route to Hertfordshire for a memorial service for my great aunt. The day had not got off to a good start as Elle had found her little bunny, Fluff dead in the hutch when she went to feed them. I really felt for her, what a horrid thing to see, such a shock and she was naturally very upset. When the call came I immediately recognised the number as the hospital.

The consultant said the results were complicated and after what seemed like ages he said that essentially I was HER2 negative, which meant that Herceptin would not help me so I was now one step away from chemo! However he was cautious, it is still not off the table. The tests that will be done during surgery will also determine what treatment I will need. So steps in the right direction.

The weekend has been spent with G and the girls, a lovely trip to Bath for Christmas market and to see Macbeth on Saturday  and we have started putting up the Christmas decorations. A reminder that life goes on and we will enjoy our Christmas.

So next Wednesday I will have my op, visitors welcome from Friday as I can’t drive for 10 days. Do swing by for a cuppa and a mince pie.

Three things I am grateful for

1, Mum’s hip replacement seems to have gone well and she is feeling better

2. G has done all the Christmas present shopping for the girls

3. As I said goodbye to my great aunt, I am so glad she has been a part of my life, some people just make the world a better place.

 

 

 

A little news

This evening I had a phone call from my breast nurse. Still no test result but at the team meeting it has been decided to go ahead with my surgery on 12th December. So I do have a plan of sorts.
I can enjoy Christmas with G and the girls .. a glass a two of Prosecco 😉 and I can also enjoy my birthday, which is a bit of a significant one. Hooray!
I hope to know about chemo next week but for now I am happy …

3 x positive things for today
A friend helped me get a surprise present for Elle
Making progress on that stats assignment
Asthma is heaps better thanks to steroids

Waiting….

Spoke to my breast nurse today and it would realistically seem that I won’t find out if chemo is needed until Friday.
Friday, two weeks after diagnosis, four weeks since the recall letter and six weeks since my mammogram. So fair to say patience is running a bit thin. I am stuck in this wierd cancer vortex…not able to move forward just stuck, living one day at a time. The girls keep talking about Christmas, I can’t really focus on the festivities until I know what is happening. I could be recovering from surgery…a known quantity second time round or quite possibly be in my first chemotherapy cycle, a complete unknown and a frankly scary prospect.
So I keep busy, lecture tomorrow, counselling Weds and coffee dates with friends. Friday will come and plans can and will be made.

To keep positive I am trying to find 3 things to be grateful for each day!
Today I am grateful to a very kind friend who came to my aid, for our wonderful NHS who saw me today and prescribed steroids for my worsening asthma and for G and the girls who listen to a rather grumpy mum!