Ups and Downs and Roundabouts!

I originally wanted to call this blogpost "The Rollercoaster Ride", but I've grown quite attached to the image of the Little Rickety Boat that I used in my last blog so it felt wrong to jump to a completely new image. And anyway, I've never really liked funfairs or theme parks - especially those wild rides that rob you of your stomach contents and scare you to death. No way - at least on a boat you can stay fairly steady. I still don't like it though - the thought of tipping over into the a vast sea or a swirling river - or worse still, being completely swept away by a huge wave. There's certainly nothing fun at all with the experience of cancer so I couldn't bring myself to write about something that might be thought of by some as exciting or stimulating. To be honest though, no image works completely for this evil cancer - I can only describe how it feels now and how I'm coping (or not) with it.

March has been a very up and down sort of month. A couple of weeks after I wrote my last post, I was feeling very, very down. Crushed, you could say - weighed down by a darkness that seemed impenetrable, stopping me from seeing anything good around me. It followed a visit to see my wonderful Oncologist. After lots of questions about my general health and various things, she told me "It's so very complicated". Turns out my

presentation (healthwise) isn't matching the objective test results - the CT scan and the blood analysis. Although most of the blood tests are good - kidney and liver function etc - the cancr markers are rocketing. In 6 weeks they have raised to 11,000 from 5,600 - not good. The scans are showing no shrinkage and some very tiny cancer cells have become visible, plus there seems to be some fluid building up. However, my presentation would suggest that I am a little better than back in November, when I was in lots of pain. All the symptoms I am experiencing - chronic fatigue, muscle and joint pains, mouth ulcers, itching skin, loss of appetite and changes to the taste of food - can be explained by the drugs I am on. I am certianly not experiencing any abdominal pain. Back in 2023, when I was about to begin chemotherapy, my cancer markers were 6,000 and the pain was dreadful. I could barely sit up at a table and it was preventing me sleeping. So, what to do and what to make of the seeming contradictions of my current state?

My consultant had spoken to me previously about 'Pseudoprogression' (a false picture of cancer growth) which can occur with some Immunotherapy. I'd looked it up, so I had some understanding. The clues are there - I had initial decrease in markers - by half - and they had dropped on another occasion during the course of the treatment by a few hundred. Unfortunately in the latest period, they had shot up. She talked more about immuno-invasion - when the immuno cells produced by the Pembro drug start to squeeze into the cancer cells, making them swell. They can even make tiny cells, which were previously invisible on a scan, become visible. So she really doesn't want to stop

the treatment too soon, without giving it a chance to really get working. I can see the sense in that. But there's a bit of me panicking inside. "What if it's actually Hyper-progression?" This is a rarer phenomenon when the immunotherapy speeds up the actual cancer cell multiplication. Yes, it's rare - but then so is Uterine Serous Papillary Carcinoma, which is what I have - so it's not beyond the realms of possibility. She didn't seem to think so, reasoning I would be feeling quite ill if that was the case. So the plan was to continue for another six weeks with the immunotherapy and then scan and test blood again. If we still aren't seeing any actual regression in the tumours and cancer blood markers continue to be high, we'll try chemotherapy again. I wasn't thrilled about it, but can't see an alternative and I really don't want to give up on this if there is a slight chance it might still work.

There was more dispiriting news though. We had been looking forward to a break in the sunshine of Tenerife. I could even visualise myself walking along the seafront, the warm breeze gently ruffling my (very short!) hair. I need to feel warm - this winter has felt so long,, cold, damp and dreary. And John needs it more than me - he's put up with such a lot from me - and I know he loves being abroad. But it clearly wasn't meant to be. I asked and I immediately saw the hesitation on my doc's face. "You're at risk of course from clots and more so because of the medication". Damn this cancer! Damn the bloody treatment! She went on to say: "How would you feel about being in hospital in another country? And then weigh up if the benefits of the holiday are more than the fears." Harsh words - but a reality check for us. I don't fancy dying on a plane from a stroke! I don't fancy being ill and having to be rushed to an Emregency department where noone speaks English and they have no access to my medical records. No, the benefits of the wonderful sunshine and fabulous seafood couldn't outwiegh my anxiety. We had to cancel (anyone want 2 return tickets to Tenerife later this month?) but we have booked a week away in Devon hoping for warmer climes.

So I reckon I was bound to be feeling down. I tried hard not to let it get to me too much. At least there were options. I had two days where I slumped though and cried a lot. I was confused and feeling desperate. Then I read something on a prayer app I use (Lectio 365) and it jolted me out of my misery and into action. It was this:

"Elijah's prayers are given in company of one who goes, again and again, to wait for and witness the answers to prayers. One of my greatest joys is to pray with friends: spiritual companions who help me name and identify the way God meets me and the way He has answered and will answer my prayers. So often, the word of God arrives in my life in ways I didn't expect, little clouds, winks of the Holy Spirit, often over long periods of spiritual drought. Friends who pray with me widen my expectations that God hears and answers, and is faithful even when I cannot see the heavens myself"

It was time to stop crying to God on my own and allowing myself to be sucked into self-pitying misery. (although there is a time for that - it can be ok!). It was also time to rally the troops. I called on friends who are in my life now and those who were there for me in previous years over hard times. They have become my Prayer Warriors. Something happens in your soul when you know others are praying for you and walking alongside

you. When I feel weak and I have no words, someone in that wonderful band is strong and has the necessary words. I feel lifted by them. I am reminded of the story in the Bible of the woman who pestered the unjust judge until he relented - I feel if more of us pester God He just might listen and act! That makes it sound as if I think God is being harsh with me by not acting to heal my cancer. Well, you know what, there may be no theoligical justification, but sometimes I do actually feel that! I do shout at God and say, "Why can't you just heal me? I only want a few more years! I'm not greedy. I don't want to be a 100. I just want to live long enough to take Caleb (our youngest grandson and currently 2) to school! Please!!"

I don't believe He's mean though. He is a good God and He is with me. I really know that. But I also want a life back. I want to be healthy. Is it too much to ask? I suppose in the meantime, I can settle for him using me for his purposes in other ways. To help others to get through this. To inspire people to believe in possibilities. To show where hope is. To speak of my own Hope.

So that was the beginning of the downs and then there were some ups. Messages from old and new friends. Visits which are always welcome. Well worth being exhausted just to see friends. Planning a holiday to Devon. Great times with two fabulous friends at our

regular Yoga class. Planning Holy Week Meditations and taking part in them. I love acting! It invigorates me, and seeing the words I have written being acted by others also excites me. The support of our amazing Vicar putting the Meditations on and the help from my husband John. All these things lifted me. As did several days when I could walk a couple of miles. Being able to eat a full meal when friends came round and going to the theatre and not feeling exhausted on the way home. So much to give thanks for and to make me feel that it might just be possible that this treatment is actually working.

And then I wake up and feel dreadful. My mouth is dry - like nothing I have known before in my life. As though the membranes were cracked and hard. I can barely swallow and sipping water feels painful until the flesh begins to hydrate. Cleaning my teeth makes me wretch and wince with the stinging pain. So then I cannot bear to eat breakfast. Walking the dogs takes a huge effort. I had to be rescued one day by our neighbour, who sees me struggling, and is so worried she allows my muddy dogs into her car! I then sleep the

rest of the day. There are days when getting up feels pointless - when going to bed seems the only option - how else can I be comfortable? When my legs feel as if they have been replaced by ones made of lead, screwed in place by rusted, pointed nails whch drill into my hips. When I have to take deep breaths and brace myself in order to walk down the stairs. When I find myself crying because I can't eat the small amount of food on my plate. Days when I feel so cold I don't honestly think I can ever be warm again. Why am I putting my family and friends through this? Why don't I just go? Shuffle off this mortal coil? Is it worth trying to go on?

It is! I know that - and please don't be afraid - I haven't even become close to wanting to end things. But I need you to know that the level of despair does become so very low. It is so hard to push upwards. So tough to try and look up - or even outwards. Which is why my Prayer Warriors are so very precious. All my friends are - praying or not. The ones who call - the ones who text and message and make me laugh. The ones who come round (please never stop coming!). And the ones I know are on their knees interceding for me. I value all of you. Please don't doubt it.

If you are reading this and you don't have those folk around you - know that places like Maggie's exist. They are committed to supporting all those with cancer and those caring for them. Don't be alone.

As for me - today, Easter Monday, did not begin well. I felt heavy of heart and full of stomach-ache. It was hard to get up and get going. I've really struggled today. It's cold, damp and muddy underfoot for walking. So I spent some time - and honestly I had to

make the most conscious and intentional effort - reflecting on what I love about my life. And it came to me that writing is very much one of those things. I can feel myself on an upwards trajectory as I type. Now I am remembering Easter Sunday and all that it speaks of. The resurrection of Hope and Life - so we can look forward to a time of real Shalom and of New LIfe. I think on the despair of Good Friday and Holy Saturday - the emptiness and darkness - and rejoice that I can view that from this side of the Cross. Because, as he cried from there, "It Is Finished" - death was defeated and a way back home was made. Those reflections won't always stop me plunging to the downs, but they make it worth scrambling back up.