And so it continues – “Genetics”

When Gareth and I saw the Oncologist before Christmas he looked closely at my recent medical history and all, yes, all my cancers. Two basal cell carcinoma on my face, G remembered those, my first breast cancer, the melanoma on my leg, a couple of months later and then a second breast cancer just over a year later. He asked a few questions about my family history, one side isn’t good. I had read an article a few months earlier which had raised questions…could that be me? “Genetics for you then.” he had said thoughtfully as had the dermatologist when she saw my history. I was quite relieved he was joining the dots, my surgeon when I asked what was going on replied “they are not connected” and was quite dismissive.

So six months later I see the genetic counsellor. I had filled in a extensive questionnaire showing my entire family history. It took a lot of completion and was not the nicest form to complete as it involved many phone calls to family members asking for cancer histories. So as she went through the details. I was aware of most of what she said, but the difference was how it related to me and my cancers. This part I found a little unnerving.  I do fit the profile a bit too well. She also gently explained how my treatment would change and the potential impact for the girls and other family members. The latter I hate, my girls will never have that blissful ignorance of breast cancer but they may have to cope with much more. I do find this upsetting, who wouldn’t ..? It was suggested that we could put the test on hold as I have been through a lot the last two years. That may be the case, but the cat is out of the bag so to speak and I would rather try and gain some certainty so I can move on. Putting it off I am simply kicking the can down the road…. and potentially putting myself at a greater risk of recurrence. If I have the gene, surgery is available which will reduce my risk quite considerably (although not prevent it!). It is quite radical but is the option I will pursue.

So forms are signed, results can come back inconclusive and it takes time. So we wait again… until September, almost two years to the day since it all kicked off. I will try to put it to one side. We have some lovely things planned this summer and I am looking forward to summer and all that is brings. September will come soon enough and hopefully we can move on in one form or another.  As ever we stay hopeful!

Things I am grateful for:-

  • I handed in my first assignment since returning to university.
  • Our recent weekend break to Avebury which was so tranquil and peaceful
  • The lovely sunshine, much needed after the seemingly endless days of rain

Things I am looking forward to this summer

  • School finishing… the slower pace that the summer holiday brings and time with the girls and G
  • Seeing my flower bed at the allotment grow
  • Our holiday to Skiathos
  • Our trip to Nice
  • Seeing Hamilton
  • Our annual trip to Giffords Circus
  • Catching up with friends
  • Going to Wimbledon.. ( always wanted to go so very excited!)
  • A visit to Highgrove Gardens

 

 

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Radiotherapy and Recovery

So another 3 weeks of radiotherapy completed. The time flew by. Life seemed busy, my youngest had her birthday, meetings at school and life goes on. Whilst I tried to rest sometimes it just wasn’t going to happen. We had one very unfortunate incident where comments were made about my cancer to one of my girls. No empathy and words said that were really unkind, cruel in fact and above all, so unnecessary. It was not just my daughter who was hurt by this, it hurt me. My girls have already been affected by my cancer and here it was again, affecting them. The last thing you want as a parent is your stuff impacting unpleasantly on your family. Unfortunately, it does, as the Macmillan support worker reminded me. The pebble in the pond, the ripples are felt by those closest to you. I talked with my daughter, held her as she cried …what else could I do? Listen… that was all I could do ….

Once again Team George stood proud. My lovely friends who joined me on my daily hospital trips. Not one trip alone, I am very fortunate and to all those who gave up their morning or afternoon I am so grateful. The natter and the chance to catch up with people   really makes a difference.

As I had to hold my breath for each zap of radiation, sometimes for up to 20 seconds, it seemed to irritate my asthma and  after treatment I was diagnosed with a chest infection which  was quite probably due to the breath hold and  radiotherapy treatment itself. I was very jaded the first couple of weeks after but I had cleared the diary and given myself time to rest I soon picked up. The fatigue slowly dissipated and my recovery has been much better this time round. I still sleep really well and energy levels are returning to normal. I have started my hormone therapy and so far side effects are minimal. I have had a lot of headaches but will monitor them and see if things settle down. This is good as hormone therapy will last 10 years, it helps to reduce the chance of recurrence. For some, side effects can be quite debilitating so  I am very glad that my body appears to be tolerating it well.

Three things I am grateful for

  • Our Easter trip to Dorset, my first trip away since diagnosis, time with G and the girls, in a beautiful place and with magnificent weather … we were truly blessed.
  • My garden, all those bulbs I planted have been beautiful, the blossom on the tree. it has given me so much pleasure this spring.
  • For anyone who knows me well, you will know my feelings on certain political events so being able (even if powered by steroids!) to attend the People’s Vote March 3 days after my treatment meant a lot. It was wonderful, such a positive experience, an almost carnival like vibe, it was so very good to be part of such a big occasion. And the signs did make me laugh!

 

Radiotherapy Part 2

So after what seems another long wait I headed back to the Bristol Royal Infirmary for my CT scan in preparation for radiotherapy. Having been a bit of an old hand after 5 weeks of radiotherapy last year, I went on my own as this didn’t faze me, or so I thought….

I still didn’t have my dates for radiotherapy. Not knowing when I would start my treatment was frustrating to say the least. Many friends have Kindly offered to help me out, not because I can’t drive to and from the hospital but having a friend with whom I can have a natter makes the daily visits far less tedious and keeps me in the land of the living. I haven’t been able to plan anything, I had a cleaner for the last few weeks last year as I become more fatigued. This time I also wanted to plan my recovery – booking into Penny Brohn for a little Penny Brohn Zen which is always good for the soul. Without dates none of this is possible.

As I will have treatment to my left side, I need to hold my breath for 20 seconds to avoid potential damage to my heart. Following a health check last year, my heart it would appear is healthy and I would like it to remain that way. I have practised holding my breath and whilst I can do it I find it quite stressful, I am asthmatic and trying to do this lying down makes me rather anxious. This was worrying me.

The previous week, a memory had come up on FaceBook – the video of me ringing the bell after completing 5 weeks of radiotherapy last year. I had posted it as I was so relieved to finish, my treatment was over and I wanted to share that happy moment. Seeing this one year later as I am about to start more treatment I felt very emotional. Never had it crossed my mind I would be back there, let alone just over one year later.

And so I entered the waiting room, I was quite probably  the youngest in that room and I just felt I didn’t belong, why the bloody hell was I here again?

As I said I thought I would be fine, so had come alone. I had, however, left the house without my purse so had no money for the car park… thank goodness G was in town and able to bring up some cash.

So funnily enough I wasn’t fine… far from it. The poor nurse who met me was so kind, she immediately acknowledged I had been there before so didn’t go through every detail with me… a godsend. Her kindness just unplugged all my feelings and out they tumbled with my tears, my anxiety at holding my breath, my frustration at not having dates and how angry I felt about ringing that bell! She was amazing, she reassured me and was an absolute treasure. I left feeling confident about holding my breath and equally importantly with my dates, so I could start planning.

So, for the moment I have decided I will not ring the bell. I know that whilst treatment may have ended, symptoms will peak for up to 10 days after and last year it took me the best part of two months to recover from radiotherapy – it left me really jaded. The good news is this time my dose is lower and I have it for a shorter period of time. So, I would hope to recover more quickly. I will also not be immediately returning to University, trying to write assignments to meet an deadline, already extended, attending evening lectures as well as looking after the girls. I will give myself time and space to recover and heal. Self care will be top of the agenda.

I also will not  ring the bill this time as I know that cancer can return, for some people radiotherapy is treating their secondary cancer and not necessarily part of a cure. I will just count the days down, thank the staff and slip away, hoping for me I do not ever have to return.

Three things I am grateful for

  • Half term – we always love a holiday even a staycation
  • Joining a choir again, singing is good for my soul
  • The lovely weather we have had, the garden is coming to life… spring is not far away

 

 

Talking to people with cancer

Today the BBC website had an article about the language used around Cancer. It was following some research by Macmillan – the cancer charity. It is a topic which certainly rang a chord with me. I would like to stress that the views on this are mine and it is my perspective. I do not speak for all with cancer although judging from the Twitter chat my views may well resonate with some following a cancer diagnosis.

I must begin by saying that I don’t think people are malicious or intend to be hurtful with their language and that is probably stems from just not knowing what to say. After all, not many people face a second cancer diagnosis less than a year after finishing treatment. Frankly there are no words other than many expletives.

Firstly, I am not fighting a battle, I am not a warrior and  I don’t think I am particularly brave.  I am just getting on with my treatment. Science is doing the work. Medical science is an art, it changes constantly, sometimes it works and sometimes it doesn’t … whatever the outcome I have not won or lost a battle, sometimes the science just isn’t always good enough. We still have much to learn about the complexity of cancer.

Secondly, I am not a fan of the “You must Be Positive”. I like to think I am a fairly positive and cheerful person. When you receive a cancer diagnosis, it is a huge shock and it is a very worrying time, with many unknowns. It was many  weeks before I knew my treatment plan, I am still unsure when my treatment will finish and treatment takes a long time. It is a journey and it has many twists and turns. So, having been told you have cancer, a disease which left untreated will kill you and facing potentially very unpleasant treatment, we are supposed to be positive. I think that is actually rather a big ask. It puts pressure on people, unnecessarily so, at a time when what we need is support which can also be unspoken in the form of a big hug! In time, one hopefully comes to terms with the news and accepts things. Then yes you can start to be positive, but you will also have your bad days and that is allowed. Moreover, we don’t say this to someone with a broken leg, to a person with a dementia diagnosis yet we say it to people with cancer. Having a positive attitude is helpful, but not something you can ask on demand. I wonder if that is because people don’t want to see us upset, scared or frightened. As a society we are still not great at death and maybe it says more about us as a society.

 

So what did help me? “I am sorry to hear this”, really helps. I inwardly cheered when people not known for swearing, swore! Encouraging messages with offers of help, be it accompanying me on the endless appointments or offers of meals/childcare post-surgery. I have some lovely cards which I will keep forever, kind words and thoughtful messages which showed people really cared. I was also really lucky that my friends knew me well, my house was full of flowers and I do adore flowers. Those that made time to visit, meet for coffee, those that listened and reassured, whilst keeping me in the loop of their own lives, I still wanted to know what was going on in their world.  The people I had around me being positive, helped me stay positive, I drew on that support. I am very fortunate to have a great team, Team George has, is and will be what keeps us (my family) going. As the adage goes, the sum of the parts is greater than the whole. So thank you to each and every one of you, you know who you are!

Things I am grateful for

  • Thank you for the treats.
  • Thank you for the meals
  • Thank you for coming to appointments, time spent with friends is always good.
  • Thank you for listening and sharing
  • Thank you for the visits.
  • Thank you for helping with my girls
  • Thank you for the flowers
  • Thank you for everything

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

 

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!