I’ve got butterflies

I’m sitting watching the majestic Federer play tennis at Wimbledon. The butterflies are fluttering outside on a beautiful summer’s day and they’re also fluttering inside my stomach at the moment.

The reason? I have an appointment for a head MRI scan on Friday and to be truthful I’m feeling nervous. I feel well apart from a cold and chesty cough.

Oral Chemo treatment is progressing with few problems and apparently I look well according to public opinion. Still I’m nervous.

It’s been three months since gamma knife treatment so the success of that procedure needs checking as does the growth of any more tumours. This is what is giving me butterflies!

They were dark days and I don’t want to go back there. However I must deal with whatever I find which takes me back to my first blog post and the poem Invictus.

I have to ‘keep faith’ as they say. I must remain positive and go with how I’m feeling – and that is good.

My family and friends are wonderful – so supportive, so hopeful, looking forward to the future with realism yet optimistically. I have to keep strong for them.

I’ve never had a bucket list. I’m not organised enough for one but if I were to have one, at the top of my list would be children and grandchildren-related goals. I’m no different from many, many other people. Love for family is all.

roger federer

So I write this as King Roger is being tested. He has learned to deal with tricky situations and so must I.

Flutter by Butterfly!

What I’ve learned on my cancer journey so far

25 May is a day to remember for the family today. It would have been Tony, my brother’s, 76th birthday, but he died in December. However it’s an opportunity to celebrate his life and all the love he brought with him.

tony

Another reason to celebrate life is Baby Ally, my great nephew, born prematurely at 24 weeks. Weighing just over one and half pounds at birth, he is going home from hospital today now weighing almost five pounds.

He is 24+13 weeks in hospital speak! A strong baby who has benefited from wonderful care by the NHS and amazing devotion from his parents. It’s not been an easy time for them, but they’ve found strength in one another and their families.

I too have a reason to celebrate the NHS. Not only have I benefited from Gamma Knife treatment, I’ve now been given a new drug only recently on the market, which has shown in trials to be effective, but is expensive.

If it suits me, the oncologist says it could, in combination with other meds I’m taking, control the cancer for a possible two years. I feel so blessed and thankful for our health system! We as a nation need to protect it.

Almost 13 weeks on from my first blog post, I want to express my belief in prayer, my gratitude to medics of all disciplines, and the spiritual, physical and moral support of my family and friends.

At the moment I feel tired but otherwise well. What have I learned so far from my ‘cancer journey’?

That most terrains go up and down with some plateaus
That it’s ok to feel scared, but not to give in to fear
That you meet many amazing people on the way
That there is goodness in most people if you look closely enough
That suffering and joy are not mine alone, because we are all human

Let the sun shine in

A beautiful April day yesterday, the warmest on record since the 1940s apparently. Also, my Mum’s birthday and yesterday was my Dad’s. I have always felt close to my parents both when living and dead, but I have felt their presence more in recent weeks.

This “cancer journey” has been a busy one over the last ten days but is now settling. Family will be getting tired of me complaining of fatigue, but I have really felt drained.

Then, in Weston Park hospital on Wednesday was a large poster illustrating the fact that apparently 90% of patients feel fatigue because of many reasons, so now I can doze during the day with a clear conscience!

I have now started monthly injections into abdomen to combat bone lesions but the oncologist thinks these are not significant. Hopefully he is just covering all the bases.

Still awaiting biopsy results, but they should be here soon, ensuring that cancer is targeted by the correct treatment – much of which has already begun. I have every faith in Dr Winter. All in all, Wednesday’s appointment was positive. I just need to build up my fitness levels to make sure I can face any challenges that might lie ahead.

So, a look around for projects to do and people and places to visit this summer to make sure I use time positively. It’s so easy to take time for granted and therefore waste it. Every day feeling well and shared with those we love is a bonus. I am indeed grateful. So “Let the sun shine in”.

A day of enlightenment

26 February seems light years away and yet it isn’t seven weeks since. How much has happened in this short space of time and what a learning curve I have been and am still on.

Yesterday was a privileged day for me and my family. I went to Thornbury hospital, working with NHS, for Gamma Knife treatment which specifically targets brain tumours leaving healthy brain tissue intact.

What amazing technology and even more important to my mind, what amazing people delivering it. My team was headed by Mr Rowe. A quiet, gentle, very clever man but also compassionate and empathetic. He was working with another neurosurgeon and radiologists and was extremely positive at the end of my treatment programme.

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This was the part of the plan I was most nervous about and yet it became an uplifting experience. Positivity was the word of the day. “Lord for tomorrow and its needs I do not pray. Keep me my God just for today.” Of course the primary cancer has still to be verified, but after another biopsy tomorrow that question will hopefully have been dealt with.

Today’s mass readings speak of coming to the light, which for believers is God, the source of all light. And if we look closely enough we can see this light all around us, in inspiring, caring people, in goodness, in the environment and certainly for me, in radiotherapy using beams of light to eliminate destructive cells. A day of enlightenment for me. A signpost leading me forwards.

“Lead kindly light, lead thou me on.”

Pauline

Sunshine out and sunshine within

Sunshine out at last and sunshine within. We are in the season of Eastertide and though the ground is wet and soggy, the natural world is showing signs of renewal and regrowth.

IH-sunshine-ahead

With these natural elements comes positivity and action in my treatment, which reinforce my mood. I have a biopsy on Friday to obtain some useful pathology hopefully, and next week I have targeted stereotactic radiotherapy on the brain mets, which, though a little scary, is good news since it is a far less invasive treatment.

I’m very fortunate in that I feel fit and well (if sometimes fatigued) which I put down to meds and my level of unfitness! I know that I’m being supported by many prayers and good wishes and I thank you all.

“As this day unfolds may we recognise in the seemingly routine and ordinary, the presence of Jesus, risen and alive among us”.

The good things in my life in two minutes

Good Friday today so I’ve decided to list as many good things in my life as I can within two minutes.

A loving family who care for me and one another, countless friends – many I have known for more than 60 years. Good health since birth backed up by a wondrous health service. A lifetime of peace earned for us by courageous men and women. A vocation I loved that also allowed me to earn a good living and provides for me still. A faith I am freely allowed to pursue. Opportunities to follow any dream I wish.

My two minutes are up but my list could go on and on.

Even after an encouraging visit to the oncologist on Wednesday, I felt a little down yesterday. Not unwell, just a little less positive than the few days before, yet there was no reason for this. Still waiting for a biopsy, and the brain team to make decisions, but both should be sorted next week.

We met another amazing nurse last week at the hospital who was so warm and uplifting. She expressed her belief in the power of positive thinking and she has been serving cancer patients her whole career and described it as a vocation. We do not hear enough of these good news stories and such marvellous people.

Good-Friday

And so to Good Friday and Christ’s ultimate gift of love for us, his death on the cross.

You have shown us, Lord, how to give and not count the cost. Be with all those who suffer today wherever and whoever they are. Fill us with courage and strength. Remind us to be constantly grateful for all the good things we have.

How blessed am I

A catalogue of birthdays to celebrate in my family today from the youngest to the oldest, to those who have gone before us.

All around us are reasons to be grateful and optimistic. When out for a short walk yesterday, there were signs of new growth in the shrubbery as well as the spring flowers cheerfully colouring the woodland floor. Spring has sprung!

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I’ve enjoyed a feeling of real calm over the last week even though there have been hospital visits for PET and MRI scans. What a wonderful blessing the NHS and its employees are. What positivity, skill and compassion they show.

And prayer. The amount of prayer offered on my behalf has lifted and supported me on “eagle’s wings”. Thank you!

And now we’re in Holy Week, a most sacred week for Christians the world over. A hope-filled time preceded by trial and sadness. But joy wins out in the end.

I don’t know what the visit to the oncologist tomorrow will tell us, but I will go feeling well and hopefully deal with the news with courage and optimism, remembering that there are thousands and thousands of others who carry their troubles alone. How blessed am I.

Pauline
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I’m not feeling depressed or bleak

St Patrick’s day today, always a special day for my Irish college pal Esther back in the day. She faced cancer with great courage and faith so I know she’s rooting for those suffering with it now.

patrick's day

Although it’s a cold bleak morning I’m not feeling depressed or bleak. Ironically I feel good physically. Meds are obviously helping.

MRI scan on Tuesday to look at brain and goings on there. I think it’s fair to say that what they find will be crucial so I anticipate getting more nervous as the day approaches. But there I go again not living in the moment.

I’ll enjoy my first cup of tea today and recent photos/videos of my delightful grandchildren. I’ll be grateful for a warm and quiet environment where I can enjoy doing what I feel like when I feel like it. Not sure though! I must not become self-centred.

St Patrick pray for us.

Pauline

Living with cancer

The visit to see the oncologist came round yesterday and meeting Dr Winter for the first time was a strengthening experience. I was impressed by his manner and his approach. He was purposeful, efficient without being insensitive, delivered the facts as he and the MDT assess them, and put a plan into action immediately.

Matt Winter & Jim Lester — On the right, ‘wonderful’ Dr Matt Winter

There are still unanswered questions so many more diagnostic tests, MRI scans etc to be done but we are now engaging with the cancer in order to slow it down, perhaps even halt its growth. It cannot be cured but plans are afoot to work against it escalating.

It’s hard to explain but yesterday I felt I was dying with cancer. Last night, after the meeting, something seismic changed within me. I had become Pauline Bristowe, a person LIVING with cancer. It makes all the difference to your head space! I had a good six hours sleep and feel ready for my hair appointment.

I am under no illusion that the next few months are going to be tough. But what a powerhouse of beautiful people I have backing me.

It’s my responsibility to be positive, to show some guts, to apply my trust to God working through skilled medics, to continue my journey, short or long, over rough terrain just as millions of people are doing all over the world.

“Lord of all hopefulness, Lord of all joy strengthen me and fellow travellers.”

Pauline

Looking for solace and hope

Today has been a more measured day than I imagined. The sun came out as we went in search of plants for the “Golden Garden” and enjoyed a brief walk at Anglers Country Park followed by a coffee.

Having made and consumed dinner, I’m now trying to assemble my thoughts for tomorrow’s meeting with the oncologist. What to ask? What do I want? That answer is easy. It’s just a case of figuring out what I can cope with physically and mentally.

Are there any treatment options for my scenario? How devastating might these options be to the person I know I am. I have always been Pauline. Now is not the time for a personality change! On the other hand, I don’t want to say to science: “I don’t trust you,” but rather “Come on. Let’s give this a go! Let’s see if we can work together.”

After the initial diagnosis I was told: “We will keep you as well as we can for as long as we can”. I know the words were well meant, but I took them as a death sentence and cannot get their finality out of my brain. After all, isn’t that what a health service is all about?

And yet, we live with a death sentence from the moment we take our first breath. Some of us deal with this better than others. I’m not doing as well as I would have wished.

I hope I’m not giving my family a heavy burden by taking them to the appointment tomorrow. I’ve asked them to come with me to help me see my way through this maelstrom, this fog. I need others to ask questions I haven’t thought about or didn’t want an answer to. How selfish is that? Another big day tomorrow then, but I’m sure there’ll be another.

hope-hero

I’m looking for solace. I’m looking for positivity. I’m looking for inspiration. I’m looking for acceptance. I’m looking for hope.

I shall seek out something green to wear tomorrow. I shall try to imitate the zest for life that baby Alexander is displaying at the moment. My great nephew, 25 weeks premature, in neonatal intensive care needs Pauline’s Prayer Posse behind him and his Mum and Dad just as much as I do. Help me to link up to all that courage, that spirit that’s out there both in our world and beyond.

Christ, be thou my vision.
Our Lady of Wisdom, pray for us.
St Nicholas, pray for us.
St. Winifred, pray for us.
St. Francis, pray for us.
All you angels and saints, pray for us.