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Cancer

[CANCER] Completing the @MaggiesCentres ‘Living with Stress’ Course

So, yesterday I finished a 6-week course at Maggie‘s on ‘managing stress’. The course is designed for those who have had a diagnosis of cancer (or those close to them), as diagnosis, surgery, treatments, and ongoing treatment are all ‘difficult and testing times’ – leading to extra stress, intense emotion, tiredness and irritability:

 

Week 1: Stress and Breathing

We talked about theories around stress, and the fact that cancer leaves you at a ‘higher starting level of stress’… so that ‘smaller things’ tip you over the edge much faster … and need new strategies to deal with “the new normal”. We thought about where stress came from, the internal and external triggers for stress, identifying how we know we’re stressed. We talked about the physiological impacts of stress – adrenalin, cortisol – and how that leads to effects such as forgetfulness and difficulty making decisions, prioritising tasks and dealing with new information. Classic sign of forgetfulness – I had booked annual leave for Monday, and totally forgot to take it!

We spent some time on breathing and relaxation exercises – with an encouragement to continue with these… tied in with (not planned) conversations about sleep – the lack of sleep, the lack of quality sleep, the interrupted sleep… and the need to not ‘stress’ about poor sleep, but still try and take time to relax … Added Matthew Walker Why We Sleep to my reading list…

Week 2: Time for Relaxation

We focused on the need to learn to relax (we’re not very good at this in contemporary society). We thought about what things make us feel relaxed – noting that things we might typically have enjoyed – e.g. reading a book – require concentration we may not have. We looked at theories of how relaxation happens in our bodies… and what that looked like physically (inc fight/flight).. the need to control our breathing/muscles. We undertook ‘the lemon exercise‘ to think about the ‘power of the mind’. We talked about the need to acknowledge worries (and how to try and deal, rather than avoid) – and then dealing with them – including distraction, visualisation, allowing ‘worry time’ and writing thoughts out.

Week 3: Thoughts

A reminder of the need to practice relaxation (and putting some of it into practice – feeling deep breathes right into the stomach) in the face of increased anxiety … which has physical effects… but particularly impacting on our thoughts (feeling out of control). We introduced mindfulness – and focused on not fearing fear, with the idea of keeping a thought diary – in which we were given strategies for challenging anxious thoughts (and thinking about underlying beliefs driving our thinking). Focus on unhelpful thinking habits.

Week 4: Mindfulness

We focused on mindfulness this week – paying attention to our present, our ‘moment to moment experience in our lives’. We focused on sitting in silence and focusing on the sounds around us. We considered the balance between ‘auto-pilot’ and mindfulness – e.g. when we drive we often get to our commute destination without paying much attention… and that auto-pilot can be helpful sometimes… other times meditation could help. We talked about living with uncertainty, and thinking beyond the ‘if only’ … allowing time to ‘be’, and hold onto things more lightly.

Week5: Relationships, Communication and Sleep

Cancer is a challenge for everyone involved … there can be challenges in relationships – we’ll be looking for supportive/helpful relationships, but cancer is a real challenge (I always remember @bowelbabe saying that marriage is a marathon, and marriage with cancer is The Ironman). We looked at passive, aggressive, (passive-aggressive) and assertive communication styles.

We’d looked at sleep earlier, but we got some notes on this…

Week 6: The Cycle of Change

We thought about ‘the cycle of change‘, and how we need to gain awareness of our behaviours so we can undertake gentle change… we talked about it in relation to smoking, although diet also came up (and the fact that diets are all about deprivation, and ‘all at once’…  how does that incentivise anyone, and too easy to fail…). Our mental health requires nurturing (and we can’t take it for granted)… looking to be proactive rather than reactive…. prioritising/compassionate to ourselves. How can we recharge our batteries? *Need to remember to book in for the half-day ‘managing fatigue’ course!

Continuing to Deal with Metastatic Diagnosis

I had an appointment with my oncologist the other week. He is pleased with how things are currently going … I’m due a heart scan and an MRI shortly… and if these go well, we’ll go to six-monthly scans. I asked about the ‘complete pathological response’, and he said they hope things have gone, but current technology cannot differentiate between scar tissue/cancer cells … but whilst it’s not growing – it’s stable, and that’s good news. The mental gymnastics of living between scans, and not knowing if you have 3 months, 3 years or 30 years = exhausting! To that end, likely to go down to 80% working (currently taking most Fridays as annual leave), and really appreciating the chance to potentially explore the local area a bit more, and catch up with people over e.g. a walk, a swim, a TV programme, or – of course – and online chat!

*and check out my friend Jo on This Morning yesterday. *Scroll to base of article to watch. I have chatted with Jo about this quite a bit, I’m not bothered by the bell, and in fact would repurpose it if I so wished to celebrate e.g. 10 cycles, but I 100% agree that placing could be done much more sensitively – away from those who do struggle.

Categories
Cancer

[CANCER] Feeling all the Feels? #BreastCancer #BusyLivingWithMets

So, it’s been four days since the diagnosis. Overwhelmed by the outpouring of love and support from others, and the anger that others have AT cancer on my behalf, those not expecting too many replies, take time to read the blog, etc.

I found it quite interesting that this time round, unlike the primary diagnosis, people knew that I was in the waiting room, and the lack of post gave a lot away before I said anything, whereas first time round, only a handful of people knew what was going on!

If you can avoid avoiding me, and avoid the pastoral tilt and the ‘how are you really’, that’s really appreciated – and yes, I know I look well – but unfortunately my body is engaged in a battle (we discussed this in Maggie’s today – our bodies may be in a battle, we are but observers of that – if we die because of cancer, it’s not because we didn’t fight hard enough, but because the cancer was too strong, and the medicine is not yet enough).

Coming to terms?

I am overtired, restless, disturbed sleep, (that analogy about trying to escape the surf still feels particularly apt) but also seeking to ‘find the joy in the ordinary/everyday’, and already feeling – I don’t know – resigned/accepting? I feel very fortunate that I’ve travelled extensively already, so although there’s more places I’d like to go, and a restful holiday would be nice to look forward to.

I’m incredibly grateful for where I live, and the team for being spotting this so early, and giving me so much hope. They have been very honest at all points on this ‘treadmill’ (it’s not a journey is it), and there is plenty of treatment I can be given. I will find out my new treatment regime on Monday morning, with the oncologist (the last appointment was with the surgeon) – but I do know that it doesn’t include chemotherapy (hooray for small wins), my hormone therapy will be re-assessed, some form of radiotherapy will be given (CORE trial being investigated), some form of immunotherapy will be given (infusion? = cannulas = eugh), and something else. Not bad remembering considering didn’t take any notes and was really in shock: as BCN said, “we’ve just whipped away the last bit of hope that you’ll ever be cancer free”, BUT the treatment options are good (even if might come with added fatigue).

I cried a lot on Tuesday (and scrolled a lot), and my sleep was horrendous despite sleeping tablet (which I want to go try going without tonight after a week of them). Wednesday = a couple of phone calls, a visit from Helen, and I went for a swim – with my brain spinning I wanted the joy of focusing on counting lengths – though on length 12, my goggles were filled with tears too! Also discovered the MASSIVE spa pool and floated in the middle for a bit (still not sure what latest thinking is about that and lymphedema, but…) Just as I’d taken my swimmers off, the alarm went off (I tell you, getting a prosthesis on with wet skin is not easy) – I couldn’t smell burning so I just carried on getting dressed! At counselling on Thursday (which will continue – we’re not sure for how long, but the plan to finish it is suspended), was highlighted that I’m already on high alert/alarm state, so that’s probably why that alarm unsettled me EVEN MORE! We finished with a reminder to try and catch myself before making decisions (self care) and finding joy in the ordinary – it was a beautiful day yesterday!

No idea what else I did yesterday except faff online and make these #tenyearchallenge images:

 

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The #10yearchallenge – with a little #breastcancer awareness thrown in. #DarkHumour

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Work

I’ve clearly been learning a bit about self-care because (and this will apply to next week too):

People think I’m as busy as ever, but I’ve definitely got less hours in my day (before this, and now I’m extra tired, but hopefully some bouncing back, though the new drugs may squash that!). My team and my managers have been great, with more concern for me as a person, encouragement to step back to process, but recognising that work is one of the things that offers structure/meaning to my life.  We are essentially going to be managing a chronic condition – and I don’t want to be staring at the wall contemplating death (like I’m ever going to not have things to do) – so they’ll be a lot of flexibility, a lot of focus on work I can do from home without too many deadlines that have other consequences, as we see how I respond to the meds, for now…

Really appreciated a visit from my Head of Faculty this afternoon to see how I was, and ask what ManMet Uni can do to make things easier:

Home

One of the things that very interesting to have to deal with, and I’ve felt this over this past year already, is being at home SO MUCH. I love welcoming people into my home (shorter visits usually preferred), checking that I’m in/want a visitor first is very much appreciated! And you don’t need to bring anything (I’ve spent a lot of time decluttering, and my chocolate pile is growing LOL), though, you know, some logs for my fire always appreciated (even more LOL).

I really want my house sorted because enough of my life feels out of control, and that feels like something that could be done! I jokingly said about getting my hall done, and some people have suggested they’d be up for this. VERY welcome – I have the paint, the brushes, etc. (not quite sure about the right ladders), though some pretty nasty wallpaper needs to come off, and there’s likely to be holes to fill too! Think bathroom needs to wait for ££ (and a professional!). Anyone who wants to give advice on gardening (or weed/mow the lawn) always welcome. Thankfully my cleaner keeps on top of the house/changing my sheets/ironing! Unfortunately, I’ll probably need to sell on my new back massager – not good for spinal mets!!

Maggies

Over the past few weeks I’ve been at Maggie’s every Friday learning ‘Where Now?‘, designed for those who’ve finished treatment, but oh yes, yesterday I also popped across to there to check that I’d be all right to continue (yes, because it’s all kinds of cancer, with people at different stages, including long term treatment), and to chat to Stephen who gives advice to help employers/employees make good decisions!

  • The first week we got to know each other, and talked about the experience of being a ‘cancer patient’ (finding it encouraging as ever to see how others cope, and the things that you think you’re just having a moan about are pretty legitimate!)
  • The second week was on exercise – I’d already headed to my parents for Christmas, and doing all right on that anyway!
  • The third week was on nutrition, which I was really wary about because of past history with food/diets, etc., but we started with ‘there’s no such things as bad foods’, challenged a whole load of food myths, and ended with ‘eat kale if you like it – don’t if you don’t’, ‘eat the rainbow’, ‘enjoy the food you eat’. Notes for self
  • The fourth week was ‘working with your medical team’, so how to get the most out of GPs, consultant appointments now that you’re not seeing people all the time.
  • This week started as ‘what do you want to talk about’ – opened with my news on #stage4 diagnosis – which segued into a talk about how difficult it can be to feel/manage emotions, thinking about death so that it’s not so frightening (we’ve prepared for it, so we can get on with living, knowing what we’re living for) and we ended up looking at anger and various other helpful angles, including my fierce desire for independence in a situation where so many things are not under my control!
  • Next week we’ll think about what’s changed, and where we go from now.

Maggies: Emotions

A few things that are helpful to share from this week’s session. This diagram comes from a form of therapy known as CAT, which was helpful after having seen You Don’t Have to Climb Mt. Kilimanjaro: The Pressure to Be an Overachieving Cancer Patient this week:

There’s a lot of pressure to come out of cancer, having found silver linings, which this excellent video voiced by Brene Brown – identifying the difference between empathy and sympathy (if your sentence starts with ‘at least’ you’re probably not saying anything particularly helpful)

We also watched this about boundaries (also worth checking out Cloud and Townsend for this), about finding ways to manage boundaries (I’m currently battling the – yes please let me know you’re thinking about me, but I need some space to process this stuff, and I don’t need to see everyone this week – they are being positive that I hopefully have many more years to go), but anyway, back to Brene Brown:

Anyway, my laptop battery is nearly dead (though I have a lovely new screen on my phone, and a pile of library books to read – go me getting that done today), and my energy is through the floor, so – anyway – thought I’d keep people updated. Probably be back with more on Monday after oncologist conversations! Is the crying done, I don’t know – we’ll see!

Categories
Cancer

[CANCER] Where now? With @MaggiesManc – and my @GirlGuiding Blanket

This morning I went to the first of a course with Maggies called Where Now? They’re run by a clinical psychologist, and obviously are run under Chatham House rules (which mean a secure space for sharing, and nothing individual/identifiable shared outside the space – as with most support groups) with a very small group.

The Where Now Course

The course focuses on the following areas over several weeks:

  • Exercise (I’ll miss this one next week, but I’m doing pretty well with Life Leisure – typically 1 gym session, 1 class, 1 swim each week + Pokemon)
  • Healthy eating
  • Emotional wellbeing
  • Managing post-treatment challenges
  • Partnering with your medical team
  • Keeping up momentum

Today we got to know each other, a few tears were shed, people talked about the effect that cancer had had on our lives, and what we hoped to get from the course, and our lives. People have very individual ‘journeys’ We were told that anger, guilt (for impact on family, etc.), and tears are all normal, and looked at the fact that most people’s lives have ups and downs, but most people with cancer start from a higher stress point, and therefore the highs hit, e.g. irritation/tears more quickly, and the difference between tiredness (relieved by a good night’s sleep), and fatigue (not). We did a relaxation exercise before having lunch together (in future sessions, we’ll all bring a contribution to the meal), before heading home (feeling surprisingly tired):

I’m always being asked at the moment if I know when things will be too much for me (those of you who know me, know that I’ll just keep ploughing forward, and I use work/food to keep me going – sometimes that’s OK, other times I want some time out), so in the workbook we’re given, it fell open at:

I will need to talk to the course convenor once I get my scan results, as the course is intended for those who have finished active treatment (barring hormonal/maintenance treatment), so we’ll see. Looks like it’s going to be great though…

Scanxiety and Bone Scans

With all the scanxiety currently surrounding my life (for several weeks now), and the Christie event (which I thought about not going to, then went to), my brain is wavering between ‘well can’t change what is going on, and they can keep people living for years even if you do have spinal mets’, and ‘oh, Manchester Town Hall reopens in 2024, will I still be here; what else can I throw away to make it easier if someone has to sort out my house’, had a surprisingly nice day yesterday!

My friend Claire came with me, literally held my hand/talked as the cannula was inserted (thanks to Liesl who for the second time, got it in first go … I am someone who has been sent home from that chemo unit before after everyone had had their allotted attempts at cannulation), then kept me company as the nuclear infusion went in (I last had a bone scan October 2017), and the three hours that you then have to wait (drinking much water, and keeping away from pregnant women/young children) for it to circulate the body, 45 minutes under the scanner (not claustrophobic like the MRI), and then I headed into work to teach 5-7pm, before heading out for Griff’s leaving dinner.

 

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It’s #waitroomfeet time again – waiting for nuclear ?? infusion with @worthyontheweb

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I have been told that my name is on the MDT (multi-disciplinary team) meeting for Monday 17th, so should get the bone scan results (good or bad). Best possible news is that it’s a benign hemangioma as they originally thought, other options are – well, it’s something we want to investigate further with a biopsy, or we definitely know it’s bad news… I’m feeling pretty resigned to the fact it’s bad news, because it’s not the first test done, the team are concerned, and the face that everyone pulls when you say that whatever is on my spine has shrunk (which indicates there are cancer cells there that have responded to treatment), but we’ll see… carrying on with life as far as possible is the plan, whilst dealing with extra fatigue and emotional stress.

I was supposed to have an MRI scan within 2 weeks of the last appointment (so by next Tuesday), but I’m still waiting for a cancellation (or a date, likely post Christmas) to also check the shadows on my liver, so those of you who pray/good thoughts, etc. it would be good to have that soon. Scanxiety is (almost) worse than knowing what you’re dealing with, so you can start a treatment plan, and understand how it might impact your life!

The Badge Blanket

So, you may know that I’ve been decluttering for years, with extra piquancy added with cancer/potentially life shortening – and felt that I have pretty much got there over the past year (aside from digital decluttering – though I might just leave everything on an old hard drive), with one of the last things to sort (aside from the house) my badge blankets. My friend Christina helped create them, I’ve sewn a lot of badges on, my friend Sian has sewn a lot on, and my mum has sewn a lot on – plus suggested that the ‘iron-on- badges be sewn on with fabric glue (excellent idea).

These badge blankets started around the campfires with Girlguiding, with every badge on there (aside from the Guide/Brownie unit badges) either earnt, or purchased from places I’ve visited/been involved in (with the occasional extra purchase on ebay when I just can’t find one locally) … which saves a load of £ on feeling like one wants to bring any other souvenirs back (aside from food/drink, and photos). The morbid side of the brain wonders what’s the point (and with my annual photobooks), but … I Keep Calm and Carry On (makes a lovely Christmas present option, LOL)

Blanket 1: Front

Blanket 1: Back

Blanket 2: Front

Blanket 2: Back

Lovely, aren’t they … helps keep one warm (although tonight having the fire on, and finishing the port, brought on the medical menopause heatwave!):

via GIPHY