Keeping the NHS in business.....

As if they didn’t have enough to do, it seems my family are insistent on using NHS resources! This time another, different member had an overnight stay, with potential heart problems. Thankfully now, discharged back into the community with a few more tests to be done. Disaster averted. 

I’ll admit the mention of a brain scan was a little scary, but it’s been confirmed there’s a brain in there but nothing else that shouldn’t be there! If my scan says the same I’ll be delighted. 

As already reported, my scan went ahead on Wednesday. I fell asleep due to my zen state of being nowadays...... Hoping for an update soon. Hard to fight an invisible enemy...... 

My gorgeous and thoughtful son bought me a lovely illustrated copy of “Alice in Wonderland”, but issued me with the warning ‘Remember, it’s a bit of a head f*ck of a book!’ I have put it with all the other books I have bought or been given...... books of calmness, books of wisdom, books to relax with. Books chosen with care and given with love. Gotta love a well chosen book!! Xxx

Ringing the bell

Today was post treatment scan day. I was horribly nervous. For no real, logical reason, but it’s been rough enough going. As ever, family and friends saw the shoulders start to sag in the last few weeks and jumped in. Cuppas and lunches, gifts in the Post and a constantly buzzing phone. All little hugs delivered and  gratefully  received.  Its hard to feel sad when you’re surrounded by good people. One friend I visited at the weekend introduced me to Hector...... the donkey she ended up buying when she went to a market to buy chickens (she just couldn’t resist him apparently! He is lovely). How can you possibly not love someone who tells you that story after you look at them quizzically following a loud eeeeee-aawwww from outside??!! This is sort of person I find myself surrounded by now. The non judgmental people, just taking life as it comes.

 I spent Monday night in a very plush hotel with my surrogate sister...... reading and relaxing in the comfiest bed ever made! Completely comfortable physical surroundings and, more importantly, completely comfortable company.  A solid night’s sleep and a lovely walk through Crawfordsburn Forest Park. A revelation for the North Downers.........you do not live on the Gold Coast..... I’m sorry, but it’s bronze! The North Coast is the Gold Coast. Helens Bay is lovely but nothing on Castlerock...... although I do love the mix of forest and beach. Definitely beautiful, but not golden.....!! Our walk helped loosen up muscles and it felt so good to breathe in the fresh air and admire the beautiful autumn colours.

Not content to just go for a walk of course, we now have a mission to track down an old friend of a gentleman we met walking his dog. We have limited information, but will work on it and hopefully reunite two friends in their 70s. 

Hubby took the day off to take me up for my scan today. After a lot of work, I’d got myself into a better place emotionally over it. Little point panicking over a scan..... wait for results day to do that! I’d worked so hard at relaxing that I fell asleep during the scan itself! I’m aware of at least 3 times I woke up after having dozed off...... on one ocassion there was a definite ‘snuffle’ (not quite snoring, not quite normal breathing). 

Whilst I am more than sure it was a trick of the light, I feel I have to share that at one point I saw behind my eyes what apoeared to be my brain with something that looked like exactly like a coffee bean sitting on the edge. If I’d opened my eyes I’d probably have seen Marylin Monroe or Jesus on the wall, ........  but I admit it publicly anyway,....... partially because I find it quite interesting......and mostly because it’s kind of funny! 

Following the scan it was off to get my picc line out. No amount of begging is going to allow me to keep it..... I’ll have to get used to getting needles stuck in me again if I’m getting blood tests done. Thankfully, I asked for my bloods results from them being taken earlier in week, and the platelets and neutrophils  are both still going in the right direction. It won’t change anything, but it does reassure me to know they’re doing ok. Removal of the line means no more ‘shower condom’ so I can shower more freely and even lie back in a bath!!

In between scan and picc we stopped for some food. Not only did I get a quick chat with a friend I know from a completely different environment, I got to ring the bell!! When I’d been doing radio I’d heard there was a plan to instal a bell in the waiting room. The idea being that you could ring it in completion of your last radio blast. I heard that the bell was now there...... and couldn’t resist. I gave the waiting room a brief explanation that the bell wasn’t there when I finished mine, and then I gave it  three dings! It’s amazing how such a simple act can feel so good! I’ll confess the accompanying round of applause helped!  Pride isn’t an attractive trait, but I think it’s ok to feel a sense of relief and be able to smile about it in a situation like cancer treatment !

Removal of my picc line was fine. No pain...........although I’d say my eyes may water a bit tomorrow afternoon when I take the tape off....... completely brilliant nurse, but he wraps arms like I wrap presents....... (the answer is always MORE TAPE!)

I have nothing but praise for the staff I encountered today. Everyone I dealt with was helpful and pleasant. One even gave me her personal mobile number so I could contact her I ever needed anything that she could help with. She’s the second one to do that. Definitely above and beyond. I even got a lovely hug from a nurse who I’d made laugh.  One gave me a post it note and asked me to write three words about my visit today (her boss had an idea...!) I wrote “<her name> is lovely” Childish feedback, but seemed like fun! Always possible to carry out a good job, even while having a bit of a laugh at the same time.....

Next!

A couple of tough weeks. Definitely emotionally unpredictable, but well supported by family and friends. It feels a bit like we’re having to come to terms with things all over again. With constantly moving goalposts. 

Truthfully I’ve been disappointed at the  ‘routine’ of some aspects of our cancer care system. It can feel a bit like you’re being thrown around. A bit like a lab rat who gets thrown to the next person as each bit is done.  There are wonderful individuals along the way, but often it’s very obvious you’re one of many and that they’re busy. 

I guess that’s the hard facts. I am one of many and the Health Service, like most public services, is at breaking point. There’s no time to sit down with a patient and explain things in detail, whilst simultaneously holding their hand. There’s often no time to  even sit down with them.  If you want scans or appointments with GPs or consultants, you have to navigate the system. And you have to wait. That can be difficult when you’re not at your best. It can get frustrating. I like structure. I like strategic plans. Like Prisoner (which I don’t remember because I’m too young, but know of due to its cult status...) I don’t like feeling like a number.  Nobody does. The lack of clarity and what I can’t describe with any word other than ‘kindness’ over my chemo being stopped, made it harder for me to take in. I’m sure there was information given that my sister and I just couldn’t take in. We were still in shock from being told chemo was stopping.  So I’ve been a bit glum...... a bit crabbit....... a bit anxious. Thankfully, as ever, family and friends are rallying round. Sometimes I’ve had to give myself a bit of a kick, but I’ve made sure I’m up and out or seeing people. I can understand how easy it’d be to wallow...... mud, glorious mud......nothing quite like it (maybe I should’ve stayed in it a bit longer and properly cooled my blood before I made a few phone calls this week....)

Would you believe that as I wrote the above, my husband walked in with yesterday’s post? (We have a box on the wall and I never remember to check it! My postie is fantastic and always knocks the door to try and hand it to me, particularly if he sees hospital letters. We were out yesterday so it went into the box). So I opened the post today to find out my scan is on Wednesday! Something I pushed for being done quickly, is being done quickly. 

So now of course I’m completely terrified! Which is pretty stupid, even for me. There’s nothing we can do about what it says.  Sing it with me.....”What’s the use in worrying? It never was worthwhile SO.....”  If only it were that easy.... but I’ve got a sneaky Monday night away ahead with a good and funny friend,  to make me laugh and to relax. Then I have a scan and can hope for a quick Consultant meeting and results. After that we deal with whatever we get told. Exactly as we’ve been doing all year. With love and laughter to push down any fear that tries to creep in.  Or with sheer delight at being the human equivalent of the Virgin Mary picture on the side of a grilled cheese sandwich!! I’ll happily settle for the girl living a normal life with the much reduced  in size brain tumour. Like others do. That was aim and everything to date had pointed to that as the outcome.  Pack up your troubles......

What is absolutely sure is that I’m still here..... I can roll over, or I can get on with enjoying things. The scan won’t hurt me.  I need to establish what life’s going to be like. Honestly, while I’m keen to work again and have a clearer daily purpose, I’ve also no intention of stopping hugging trees and enjoying simple acts of kindness (hopefully both giving and receiving). On Thursday I had lunch with some of my dearest friends, alongside my best friend from childhood. Yesterday I visited a ‘new’ friend who went to a market to buy chickens and came home having bought a donkey called Hectar!!  What a wonderful life!! Xxx

Take my hand.....

I’m not quite a stranger in paradise....... more like a stranger in hell im afraid..... Last week wiped me a bit. I hadn’t blogged about it, but prior to my ‘no more chemo’ news, my husband, sister and her partner had booked to go away on the Saturday night. Just a local break, but one we were looking forward to. Unfortunately earlier in the day a family member took a tumble and ended up in hospital after head butting a road.....  Thankfully no major damage, but a few nights in hospital to be sure.

So we’d had to cancel a planned treat, were worried about someone we love, and then had the added bonus of pre chemo stress...... to be topped off by the ‘no more chemo’ news. I can write as much as I like about feeling relieved and knowing it was the best thing, but the truth was I wasn’t feeling relaxed! All my usual family and friend steadies rushed in, instinctively knowing I might be struggling with so much going on....... my sister bumped her flight, my hubby took a few days off work, friends rang, called round and messaged. The Midnight Bark put into action again, and my faithful friends making sure they knew they were there. As they always have been.

By the weekend I was starting to feel a bit less anxious. I was starting to believe my own words of reassurance. Then I went to a charity coffee morning, being hosted locally by a lady who’s husband has a brain tumour. 

As I found myself in a room with him and another lady also in our position, I started to feel myself relax. What had felt to me like the ‘failure’ of not completing six chemo cycles became a normality.  The tiredness, forgetfulness and frustration became a shared concern, and things we could laugh about together as fellow experiencers (I don’t like the word ‘suffer’... you have to allow suffering.....). Suddenly I was being told it’s normal not to finish the chemo course and often has minimal impact on outcome.... I guess they can’t tell you this at the start because it’d give people an ‘easy out’...... I’m glad I didn’t know at the beginning, but I wish they’d told me when delivering the news that my chemo was being stopped. 

I walked out of that house like a weight had been lifted off my shoulders. I’m not a failure for not finishing the planned six cycles of chemo. It may end up making little difference in the long run. Others have the same ‘oddities’ as me and it’s ok. We’re all here. We’re all functioning well. We’re all learning to live with it........ A local support group is being set up, which will be a great way to get to know others in a similar situation. 

Take my hand. You’re not a stranger in paradise, but you’re not alone. Others know how you feel. Yet more to bolt into the support cage! Xxx

It’s still just news....

I know the reality is that it makes no difference really. Chemo was the older fashioned, snazzier appearing braces to back up the much more practical moved button of surgery and belt of radio. Nobody notices the button was moved. You can’t see it. Very few say “Oooo, look at that worn, brown leather belt. Look how well it holds up your trousers.” Yet there was plenty saying “Wow, look at those fancy braces! Look at how they’re holding up your trousers”, despite them already hopefully being held up by the moved button and the belt. 

The braces served little purpose, but to ensure my button didn’t pop, my belt didn’t break and my trousers fall down! They were brightly patterned and made me feel like I was making a special effort, which is why I quietly grimaced through them digging into my shoulders and the fastenings cutting into my waist. As the belt served as much of a purpose as it could, I was left with just the braces.  I knew eventually they’d be worn and faded and would have to come off. I thought I’d get longer out of them and have gained a bit more weight when the time came to take them off.. I also thought I’d have some warning.... But the reality is that the bits where they were rubbing had other ideas. The braces snapped. 

So now I have no belt and no braces...... exactly the same as the case has been for years and years. I do, however, have a moved button (surgery), a slightly elasticated (medicated) waistband and a group of people walking alongside me. Some are tailors, some will give my trousers a wee pull up every so often and some just have excellent eyesight......... regardless....... the trousers won’t instantly fall down!  

The braces were always going to have to be taken off. We’d decided they’d come off next year. As it was, they snapped, and Health and Safety removed them for fear of more damage (like being caught in a shredder heaven forbid!!) Don’t be alarmed to hear my braces have gone. Look back and realise what awful braces they were and how much discomfort they were causing. It was wise to wear them, but they’re gone now. Let’s see if these trousers stay up alone with the moved button. I never liked those old braces anyway! They constricted me so much and weren’t my colour. Come on trousers....... let’s go get on with living!  Xxx

It’s just news

Unexpectedly I’m done with chemo. It was taking me 9 weeks for my bloods to recover and then, having them being ok on Monday, they droppedagain before I had my planned treatment yesterday evening.......  yet again everything changes in 24 hours........ My sister and I headed up the road yesterday, all prepped for the start of cycle 3. Halfway point. As per our routine, my bloods had been taken on Monday and I’d had confirmation of take off. We had a great day in Belfast...... doing an important message and visiting work friends. 

By the time we got to the main event I was a bit tired, but happy, and ready....... My day was completely made by the sight of my gorgeous son popping in to say hi before his next lecture.

They took bloods again........ apparently they always do this (I can’t remember but confirmed by my sis!) I knew. I swear I knew. I even jokingly said to the nurse “If these have dropped and I don’t get treatment, I’m holding you personally responsible!”  A joke, no more than that. But deep down I knew. We sat. We waited. I practised deep breathing exercises, because I knew. 

Sure enough....... called in to the doctor to be told my neutrophils had dropped from 1.5  to 0.8. Just like that. Overnight. I’m not sure when I’ll ever really accept that your world can change so quickly. My own consultant and nurse it seems we’re busy somewhere else...... so, despite issuing the instruction, weren’t there to properly explain (in fairness, the clinic was packed and I’m sure they’d worse news to deliver)...... I wasn’t having any more chemo. No delay. No reduced dose. No extended regime. No more. Treatment over.  The doctor who told me was very good and answered every question thrown at her, but it was undoubtedly a massive bit of news. 

I have absolutely no doubt you have read that and translated it in exactly the same way I initially did..... “Go home, there’s no more we can do for you.” In a way that’s completely true, however........... and I’ve learnt there is always a ‘however’.......... the facts remain. 

Let’s look at them  (there’s a tv show nagging but I can’t quite get it.... “Let’s look at the facts”...... Crimewatch? ?);

We knew from the start my tumour was incurable. The agreement by all concerned was that we would throw everything available at it and see how much we could shift. The next step is to have a scan and find that out. We already know a lot was removed through the surgeries. My last scan was while I having chemo, so it was difficult to measure the effects of radio and chemo. The aim of treatment was always to get it to a manageable, non aggressive state....... the same as it’s been for years...... The scan helps us see if this has happened. Two bouts of a chemo that appears to have a very strong impact on my good cells, may have had significant impact on the bad ones too. Especially when it followed surgeries and radio. Chemo was always the final blast of RoundUp for the roots. Let’s see what the roots are doing, before we jump ahead into despair.  Maybe the weed has stopped growing. Regardless, I feel relieved of the checks in place to ensure you aren’t given more chemo than your body can take. 

This has been a horribly hard year for my whole family. And yet, let’s not forget, my husband is thoroughly enjoying a new job, my son has gone to a great university, and  I have shown myself what I’m capable of and made fantastic friends. Like every other year, there have been fantastic bits and awful bits....... the dips have just been a little more pronounced than anyone would like. 

 Now, for the first time since 20 January, I get to be out of treatment and not worrying about the next one. My body can finally have a proper break. Plus I can see properly “how I feel”, without wondering if it’s a side effect of chemo etc. Now I can see what life might actually look like. What will I need help with? What can I reasonably do? There’s a lot more in the second category than in the first..... I know that already.  Now I can properly assess all that and see how my new life is going to look.

I’m not trying to play down something and pretend I haven’t shed tears. It’s scary, but it’s always been scary. The truth is nothing has hugely changed. We’re all terminal from the moment we’re born......I’ve no more of a deadline than you have. 

As my very wise son said , “”It’s just news. It’s not inherently good or bad.”  He’s absolutely right. Let’s not catastrophise!!,,,,,, let’s enjoy not having chemo anymore!! And being alive! We’ve done as much as the science told us to do.  Now let’s see what’s next. Bearing in mind it’s been in there for years! My aim is to just get back to the way I was before this thing started stinging. (Although a calmer, hippier version!) xxx