Reflections

I look at my blog sometimes because there's something there I'd like to refer to, such as a cancer story, or something to do with work, or just because I'm prompted by a memory. My blog is really my public online diary. But that's OK, I know very few people read it, but it will be here for my family in the future, and for anyone who is casually browsing and finds one of my stories or posts on one subject or another.

I was looking through my cancer posts as there was news in the Telegraph that smear tests may be less invasive in future. Oddly enough, I had my latest test recently, because I had some HPV cells in my last one so instead of falling off the test list, I'm staying on for a while. Thankfully, all clear this time.

I wanted to share with colleagues how important it is to attend these tests, as uncomfortable as they may be. They really could mean the difference between life and death, or life and a more invasive treatment regime that would make the smear test pale into insignificance. By invasive I mean things like surgery, chemotherapy, radiotherapy. Catch it early, and you are likely to have a better cancer journey than many.

My cousin's cancer is back, but he is very stoic and - whilst having treatment - is fundraising for CRUK. He is confident that it will be kept under control - and he kept up his tests, so it was spotted early. I have had another colonoscopy because I had some abdominal pains, but they were clear. Yes, the colonoscopy was definitely 'not fun', and the results were negative, but I'm glad I went through it instead of leaving it to chance, and also letting the thought - and that can be almost as destructive as disease - continue to nag at me.

 The old mine, Adelong (C) 

Are you worried? Do you have something that doesn't feel right? Get it checked! Don't worry about your GP's time, that's what they are there for (and they'd rather treat you sooner too if there is any need). Are you worried it might be something, or nothing? Well something is a hell of a lot more worrying than nothing, so go get that check, and eliminate the uncertainty. You and your family will benefit from positive action, I promise.

But back to reflections, as well as looking back on my cancer journey (and Sheena's), I also read one of my posts about my visit to Malaysia and Borneo - and that's a memory I treasure. I wish I could go back and visit Baku forest again and see the proboscis monkeys, or cross the river in Kuching to taste one of those impossibly bright cakes they sell, or see a langur in the wild again. But, I did those things - how lucky am I? 

Look after you, as well as those around you. Follow up on those tests, anything that doesn't feel right. Check it out. 

Useful links:

• Invasive smear tests may become a thing of the past
• CoppaFeel! | Check Your Chest | Breast Cancer Awareness Charity
• CHAPS - Home  - prostate cancer support
• Prostate Cancer UK | Prostate Cancer UK

Liked this? Try...

• Being in Malaysia
• The City of Cats
• Adelong morning

Mental health

Quite a few of my posts cover health, and a few have covered mental health, but I've certainly not talked about depression, for example, as much as I have talked about cancer (links to my mental health related posts below).

Why? Because of stigma, because it is an admission of weakness, because I want to present my 'perfect self' online? Well you know the latter isn't true if you have read my blog in the past.

From about 1998 to 2001 I had clinical depression. It was an awful time, I had two small children and a demanding job and inside I felt completely useless, worthless and kept being told by my other half at the time that 'the problem is there is no problem'. Wow, that was helpful.

I sought help, I got anti depressants. I distinctly remember on day 16 of taking the pills, whilst riding my bike in Cambridge, I suddenly felt like a weight had been lifted from me. The tablets worked! I treated the symptoms, but not the cause. I managed fine - still felt low now and then, but I had two amazing kids and a great job, I kept up with karate, and things were on an even keel.

Around 2007 my marriage started to deteriorate, but by 2012 I was in a very dark place once again, and no drugs, or talking therapy would help. My husband would come home and tell me he was disappointed that his new partner (that's a whole other story) was not being faithful. There's a bit of irony there, no? We were still living together, but I had moved into the tiny spare room onto a put up bed. I contemplated the unbearability of the pain (which I remember as physical, not just mental). But I had two children, who were the one clear perspective in my life at the time. 

To help manage my stress I would go swimming. Just up and down, no thoughts, just moving in the water. It was about the only therapy that helped. I'd been to see Relate on my own early on, and being told that what was being said to me, how my husband treated me was 'mental abuse' was a shock. I didn't realise, didn't recognise, that the person I then loved (unloving takes time) was actually causing me such physical and emotional pain. They put a label on it (abuse). I hadn't wanted to. 

One day when at swimming, I texted my husband that I'd had enough, we had to split - move apart. I couldn't take it any more. When I got home, he said 'I got your message. I thought you'd gone to kill yourself'. That was another mighty shock. Because if that's what he'd thought, why didn't he stop me? That remains a resentment I find hard to forget, though the many other things that were said and done have been comfortably forgotten. Holding on to pain or anger only hurts me, so I don't do it. 

But this story does have a happy ending. No need for detail for the years in between, but I did attend a course by Richard Wilkins called 'Broadband Consciousness'. And that really helped me change my attitude to myself. Richard describes happiness as being like a tide - sometimes it's in, sometimes it's out, it's not a static state of being. For me mental health is like physical health - sometimes it's good, sometimes I get ill, and do what I can to get better, or manage symptoms, so I can lead a fulfilled life and be there for those I love.

But here's the happy ending - because the critical change was that I managed to alter my self-perception. The five days with Richard, Liz and the others gave me the knowledge to understand and challenge that inner voice (which was echo chambering years of undermining). I started to like who I am. 

In 2018 I met my amazing wife and in 2021 we got married. The tide is in.

Liked this? try...

• Resilience
• Kindness is a strength
• Get well soon - this blog from 2017 includes a link to the charity I now work for. 

Resources:

• Mental Health UK
• Rethink Mental Illness  
• Samaritans
• Mind
• The Ministry of Inspiration - Richard Wilkins and Liz Ivory
• I have a black dog (video on depression)

Don't defer diagnosis

Have you put off going to the doctor because you are worried about the diagnosis or think you shouldn't bother others?   I have.  Have you ever said any of the following? I'd be surprised if you haven't:

"I'll leave it for now", "I'm sure it'll get better in time", "I'll get round to eventually", "yeah, but I have to... first". 

Here's a quick list I'd like you to read and consider carefully. Put aside your 'yeah but...' and put yourself first. 

1.    You are not 'wasting' the doctor's time with a symptom. However minor it might seem, if it is a marker for disease (eg blood in your urine or faeces, unusual persistent pain or anything else which you know is just not right for you), then tell your doctor and get an appointment. Insist if you have to.

2.    Attend all your scans and tests, no matter how uncomfortable or unpleasant. A scan or smear etc can detect something that you can't see or feel. You are not wasting time by attending these appointments, in fact you could be saving more than just time.

3.    Get on with it. It's very simple - the earlier something is diagnosed and can be treated, the more chance you have of living a longer, healthier life. And remember, early diagnosis may also mean you can sigh with relief that whatever has been bugging you is, in fact, something easily treatable.

4.    Have a regular 'feel'. A small lump could be something as simple as a cyst, and if it's anything else, the sooner it is attended to, the better.  You know which bits of you to check, I'm just reminding you to do it regularly.

5.    Getting a diagnosis can be scary, but it's also vitally important as early diagnosis has such an impact on the outcomes. 

6.    The shock of diagnosis (for you or a family member) can be huge. This is perhaps the hardest to get your head around, but is very important: take control - work with your clinicians, friends and family, with support groups and charities. Diagnosis is often a 'first step' in your journey, and everyone takes a different path. Your preferences and wishes should be listened to by all involved in your care. 

7.    Treatment can be challenging, but it may mean the difference between all your friends and family being there for your next birthday, or for your funeral. Treatments for different conditions are highly personalised these days so someone else's experience may not be a good compass for your journey. 

8.    It's OK to ask stupid questions. And it's OK to ask them more than once.

9.    You are not alone. You never know who else may understand what you are going through -  share (in the right way, with the right people, in a way that suits you). You will be amazed who comes out to support you.

I was prompted to write today not only because of my own experience, but because I read about a family who has had their child diagnosed with a life limiting condition. The diagnosis (which they did not delay) has shattered the family and they were frozen with fear. Nobody wants a diagnosis that casts such a shadow over their lives, it's out of human control, it's almost mind-bendingly difficult to assimilate. But others stepped in to seek help. In reaching out, their journey is no longer quite so desolate - there will now be someone there with them, with a lamp to help light the difficult path ahead.   

Useful links

• How do I check for cancer?

Liked this? Try...

• Four wounds and a bruise
• Attitude and examination

Photo courtesy of https://greatpeopleinside.com/dealing-with-procrastination/ 

Author's note: after my first draft of this post, I went through and took out all the 'don't' statements. It's too easy to list what not to do - I hope turning it into what we 'can' do reads better.

Resistance is (not) futile

Picard did escape the Borg in the end.

It's over a year since my surgery - since a large chunk of my lower bowel was removed, evicting Gertrude and her offspring. It's a year since Ripley was introduced and I am now so used to it, I don't really think about her (until she makes a really terrible smell!).  Abdominal surgery is pretty full on (ask anyone who's had a caesarean section) and recovery is slow. But at Ipswich hospital I was put on the 'enhanced recovery after surgery' programme which meant they tried to get me moving on day three (which would have been fine if I hadn't collapsed). 

My initial exercise regime was walking the dogs, gardening and working my way slowly up to chopping logs. Though I was getting my fitness back (and I had lost weight thanks to Ripley) my core - those muscles that had been cut through to complete my therapeutic surgery - had about as firm a six pack as a blobfish.

Initially I started Pilates at our village hall. I still go every Thursday evening and (although I can't do the exercises laying on my front) I am definitely making progress. But a few months ago the Hospital called me - they have a pre-hab and re-hab exercise class for people who will have or have had bowel surgery.

The classes involve resistance bands and, I have to say, the first few sessions, even the warm up got my heart rate up more than I'd been used to since pre-surgery. There were only a few of us in the class - two of us post-op, and one pre-op (though more joined later). Each of us had a unique experience of surgery and recovery, including our instructor, but there is no doubt that every one of us benefitted from the class. I managed a couple of classes at our local swimming pool too (thanks to the John Le Vay centre at Ipswich), but the new job meant I couldn't carry that on during the day sadly.

I'd never done resistance exercises before - but there was so much that was relatable with the breath training I'd done with Jen Tiller. I love it when things all tie up - Buteyko breathing, Pilates, resistance exercise in swimming class and resistance band training.

Now I'm back at work, and though I sit at a desk all day again (instead of pottering around the house and garden), I find that I am improving my posture, breathing better, and still doing regular resistance and Pilates classes.

Resistance isn't futile - resistance is part of getting my fitness back and building confidence in my body. It may have had a serious run in with cancer and lost a large section of my insides, but I am alive, and kicking, and grateful for the care of the NHS, and the love of my wife and family. Resistance is futile in just this one instance - love. 

Useful links:

• John Le Vay Centre for Cancer Support at Ipswich Hospital
• Bowel cancer symptoms 
• Exercise guidelines for cancer patients
• Move more for health

Liked this? Try...

• Situational Awareness
• Troublesome angels (short story)

Magic words

Not abracadabra or open sesame, but 'cancer free'.  When we went to the hospital on Tuesday, those magic words were spoken.

It's not over yet though - we've won the main battle, but the war is not over. Chemotherapy and surgery have removed all traces of cancer from Sheena - but we still have to make sure it doesn't come back. So radiotherapy and herceptin injections still ahead.  It will take us up to the anniversary of when she was first diagnosed.

As we sat in the office with the consultant radiologist, we heard the bell ring and a round of applause. Someone in the clinic had finished their treatment and were celebrating.  We are a way from this still, but the anticipation of ringing that bell, and the feeling you get when you hear it, is wonderful. 

Sheena's hair is starting to grow back, and she is slowly beginning to feel more herself again. We know it will knock her back again when radiotherapy starts and the tiredness and other potential side effects kick in, but for now we are enjoying that precious moment knowing that the treatment so far has worked, and worked well.

Our admiration and respect for the NHS staff is unbounded - our determination to see this through to the end and celebrate in style is unlimited.

It seems like cancer has been the subject of all my blogs recently, but it does kind of impinge on all areas of your life.  More blogs, with different subjects, will follow.  But in the meantime I am going to ask you all once again:

Have those scans/tests that you need
Check yourself regularly
Don't ignore any symptoms that you don't understand

Links:
Check your breasts
Breast cancer in men
Ipswich Blossom Appeal

Coming soon...

Where I live, I love. Life in the woods.
My amazing grandson. Of course, he's the most perfect child in the world.
My amazing daughter and her wedding.  It will be beautiful and perfect.
Our amazing holidays - oh soon please!

Attitude and examination

Every third Wednesday we go out for the day. We drink tea, eat biscuits, have lunch, play board games and often laugh quite a bit.  We meet some lovely people and chat about all sorts of things. 

A pleasant outdoor area at the hospital

And during all of this, Sheena is having her chemotherapy.  The side-effects vary, and sometimes the treatments for the side-effects have side-effects, but as you can imagine it is not a pleasant process.

But we make the best of it. I’m not having chemo – this poison is not being pumped into my blood – but we share the experience to an extent. I always go with her.  Some folks turn up and sit for the day on their own, no one to accompany them during their treatment.  We often share our stash of sweets, I offer to make tea, or just chat. Some folks just sleep, some leave with huge smiles, knowing it is their last day of treatment. Some wander past as they are shown round and are fearful of the unknown. We were like that just a few months ago. And then it becomes normal.

Attitude is key. I cannot express enough how Sheena’s positive attitude makes the day - and the treatment - bearable. For her it is the start of feeling really bad for two weeks and feeling fine again just in time for the next treatment and a repeat of the whole cycle again. For me it is seeing what effects the chemo has on her, and how it changes our lives – for now.  Even at her lowest, she can see through to the future and to when this is all over.

The good news is that there are just two more left – one next week and then one in April. After that there are other treatment regimes to come but reaching the end of chemotherapy is a most welcome destination that is now almost in sight.   

The staff at the hospital are amazing. Their positivity and kindness – the nurses and the support staff – goes a long way. 

At the start of her treatment Sheena posted on social media about her condition and what lay ahead. She also encouraged friends to do those self-examinations that so often can lead to a diagnosis that enables life-saving treatment. To my knowledge, at least three people ended up needing to be referred due to something that they found. Her willingness to share and be open about her cancer has probably saved more lives.  Cancer Research UK say one in two of us will experience cancer, so please give yourself the best chance you can. Do the self-exams, go to your screening appointments, and if you have any worrying symptoms go see your doctor.

Links

·        Ipswich Hospital Blossom Appeal

·        Breast cancer care

·        CRUK cancer checks

·        Prostate cancer

Liked this? Try this…

·        Learning new skills

·        Too busy to blog

·        First Aid

Photo: Carolyn Sheppard

Learning new skills

I’ve chosen that title because it is one of the things that has happened since my partner Sheena was diagnosed with breast cancer in 2018.  She went for her regular mammogram on 28 October – by 28 November she was receiving her first chemotherapy treatment.

The NHS moved quickly and efficiently and have been brilliant all the way along so far. We are at treatment two and the third will be in a couple of weeks.  I use ‘we’ because that’s how it feels, we are going through this together, but it’s a hell of a lot easier for me than for her.

Sheena and I only met in February 2018, so this has been quite a test I guess, but maybe that’s what February was for (see ‘The Gift of Snow'), making sure we were both up for what lay ahead! 

There has been a whole range of emotions, but both of us feel amazingly confident – we know this is curable and have complete faith that this time next year we will be celebrating. 

From long hair to....

In the meantime, we know we have a very tough year ahead – with the first stage (hair loss) happening as predicted (Sheena couldn’t wear a cold cap, it gave her a headache), I learned my first new skill – hair cutting!  Admittedly the job I did would not provide me with suitable credentials for a career change, but (beyond using a head razor in the past) it was my first attempt at a haircut.  

Watching the chemo go in – and it takes about an hour – is a difficult process. The first time I noted that two of the syringes looked like they were full of Vimto (her favourite tipple), and she talked non-stop to our lovely nurse.

Before the second chemo, Sheena's white blood cells were down and her immune system not at ‘ideal’ for chemo – but given that her cancer is a nasty little bugger, it was deemed that chemo should go ahead but with additional support.  The extra help was a series of injections for five days following the chemo.  This time we played Scrabble as the chemo went it, with some help from the nurse of course.

Sheena is an ex-auxiliary nurse herself and has given more injections than I’ve had Chinese takeaways, but day one she did not do a great job on herself, with some of the medicine flying in the air.  The syringes are easy to use and have a fantastic self-retracting needle, but you still have to poke them into yourself. Day two she stabbed herself like she was throwing for 120 in a darts final!  That was enough – my turn to take over. Oh dear, I’m not a lover of needles to say the least.   A paramedic friend showed me how to do the injection and I had a turn – not great but an improvement on days one and two.  I finished the course for her, injecting Sheena (reasonably painlessly) and I am now confident that, should it be needed again, I can do it.  A new skill I never thought I’d acquire.

We both have a very positive attitude towards this horrible disease and know that we can beat it together.   The moral of the story is please do not miss out on any of your regular scans, screenings or check ups.  The earlier any cancer or other disease is detected, the better are your chances of recovery.

Happy New Year.

Liked this?  Try…

The Gift of Snow

From Heartening to Heartbreak

First Aid

Baptism (of fire)

Links

Ipswich Hospital Blossom Appeal
Breast Cancer Care

Get well soon

Earlier in September I heard David Beeney talk about mental health at work, and he used an interesting example:  The staff member who has a broken leg gets get well soon cards and contact from colleagues to see how they are doing.  The staff member who is off with stress is usually ‘left alone’ and there’s little or no contact, and no get well soon card. Yet which of these is most likely to need the contact, support and to know that others are thinking about them? (NB - make sure you read the comments below that followed on from this post)

One point that David wanted to make is that it is OK to share – to tell others if you are having issues around mental health, just as we would if we had – say – a bad back, diabetes or a headache.  But that involves a huge culture change; since Victorian times the British (I can only speak from what I have heard, read or experienced here) have been very good at the ‘stiff upper lip’.  Prior to then, the British were known for being rather emotional – perhaps better at sharing how they were both physically and mentally – than we are now.

As someone who has depression (sometimes quite a big black dog, sometimes a puppy, sometimes it’s away in the kennel) I find it hard to share what is going on in my head, because – as an example – depression makes you lose perspective. You won’t share, because no one will care anyway.  You won’t share because they might ‘find out’ you are not as amazing and indestructible as you want everyone – including yourself – to believe. Sometimes the logic of the dog is not logical at all.

The purpose of this post is the same as David’s talk – to get the conversation out in the open, to be prepared to talk about an issue which, as a nation, we seem to try and keep hidden.

There are many statistics around mental health, such as one in three adults, and more recently 25% of teenage girls. In other words, there's a lot of people who are contending with mental health issues.  Sometimes individuals might have an ‘episodic’  issue, but, if you think about mental health as a spectrum (as we do with autistic or other developmental states), then we have probably all had an issue at some time or another. The question (or perhaps diagnosis context) for me is how much it affects everyday life.

Help and references

• www.mentalhealth-uk.org/

• Mind  

• Sane 

Teenage mental health resources

• www.stem4.org.uk

• www.respectyourself.org.uk/

• Youngminds - reports on mental health for younger people and charity

Resources

• Historical context of Victorian attitudes – V&A Museum

• A beautiful mind - history of the treatment of mental illnesses

• The age of emotion (Radio 4)

Photo: from Pinterest (no credit identified)

Footnote: since first publishing this, a comment came in that it isn't always appropriate to contact someone who is off work for mental health reasons.  Yes, that's true, and contact may in fact increase problems rather than offer comfort, but the very principle that people off sick because of a mental health issue is 'taboo' is what is challenged here.  If you have a colleague off sick for any kind of mental health reason, check before contacting them with your HR department or boss.  Maybe a get well soon card could be the best thing they ever got.