Categories
Cancer

[CANCER] What’s going on – it’s all going on!

When I first started this ‘cancer journey’ (what a horrible term), Andrew Graystone said to me, you describe yourself as a life explorer, just here there’s another aspect of life (albeit unwanted)… and that’s how I’ve tried to live with this cancer … but sometimes it’s flipping hard work. Super thankful that Andrew and Jane – and many others – remain alongside me, especially as we struggle with the extra layer of COVID.

When I received my primary cancer diagnosis, it was terrifying, but it seemed possible to deal with the treatment, and then seek to move on forward. When I got the first secondaries diagnosis, that was more scary but with NEAD after treatment, I was feeling pretty hopeful for a normal length life. This last 6 months, since the new tumour in the sternum hospitalised me, it feels like a relentless struggle, and especially since November, a bit of a downward slide, which leads to questions – am I going to get better, or is this the start of a managed decline? Am I like that person – I remember Chris Evans joking about this years ago – trying to get the last few drops of fuel out of the rental car before having to return it with an empty tank!

This doesn’t mean that I’ve given up hope (just need some space to speak out the fears (not necessarily on social media):see link to ‘toxic positivity‘) … really I hope that we’ll be able to get on top of the multiple pains in my right shoulder, the nausea that accompanies the capecitabine, the breathlessness that started in November and is getting worse, and the lymphedema – where I’m carrying maybe 5kg of fluid in my arm (and nope, we can’t just put a pin in it and drain it out!

Talking Strategy for METUP UK

Monday morning, I joined an (early!) Zoom call with Oxygen Strategy, where METUP UK were given insights into how UK government policies are formulated, and how to we could more effectively put forward our arguments for better policies to make a difference to the 31 women who die every day in the UK… and for which there feels as if there is no sense of urgency anywhere!

Secondary Breast Cancer Nurse (SBCN)

Appointments with oncologists and other consultants are understandably swift … so, since July, I have had an SBCN (ideally every secondary patient should have one from diagnosis, but this is still not happening). I had an hour+ conversation with my nurse, talking through where my understanding is at, and queries and worries that I may have. One of the joys of ‘digital’ is that I’m able to email queries – including a photograph of a rash on my chest (which, along with some nodules near my neck, and the lymphedema – feel like signs of skin mets)… As I have been bounced around so many different medics, there’s a decision to centralise as much as possible at the Christie – so next Wednesday, when I pick up my next prescription of capecitabine (I’m on my ‘week off’ after 2 weeks of tablets), I will do so at the Christie. At the same time, will get a physical examination, and some medical photography and then we’ll find out what is going on.

We talked about the breathlessness – maybe my body has felt under some kind of attack and is now ‘guarding’ so not allowing space to expand. So, I need to find some breathing exercises – and make sure that I’m not breathing from my shoulders! Also a reminder to take oramorph around 15 mins before I go out for my (shorter and shorter :-() walks – in large amounts = not good, in small amounts, can relax the lungs. The nausea is probably not helped by the fact that not eating enough (carbs)/not lining the stomach enough before taking the tablets – so working out food I can keep in bedroom to eat in the morning with tablets (and just ordered an extra toaster so can have some crumpets…) – along with some fun lansoprazole. Like many medics, are encouraging me to ask for more help (whether professional or friends), including e.g. batch cooking (though right now am trying to eat down my lovely Cook meals so I can defrost my freezer!)… and yes, if you ask if you can help, I try and collate ideas into a Wishlist! Lots to keep thinking about and asking questions about, as, as she said ‘your cancer keeps surprising us’ … yes – it keeps throwing scary curveballs at me.. and have to keep getting up and finding a new way to plod on day by day…

Occupational Therapy (OT)

Not to be confused with ‘Occupational Health’, OT is described on RCOT site as:

An occupational therapists job role is to help people of all ages overcome the effects of disability caused by illness, ageing or accident so that they can carry out everyday tasks or occupations.

An occupational therapist will consider all of the patient’s needs – physical, psychological, social and environmental. This support can make a real difference giving people a renewed sense of purpose, opening up new horizons, and changing the way they feel about the future.

I’ll talk about the lymphedema in my next point, but it is causing me a lot of problems – it’s now in the my right arm – which is my dominant arm! There’s a lot of things I can’t reach, and I can’t grip properly, plus the questions of what may be causing me pain and breathlessness. I struggled with this visit, as I don’t want my house to look like a hospice (and as she kept saying ‘your house is very stylish, but not particularly standard’ in terms of using accessibility aids), and we talked a lot (she was very supportive) about how their job is to try and help me keep dignity and independence, rather than the opposite. But the OT has made a list of things that she can provide ‘on prescription’, a list of links of things to get for myself (e.g. small bits and pieces for the kitchen), and asked me to consider a Stannah Stairlift – in the sense of getting it before it’s useful… but obviously I am hoping that we will manage to improve my breathing, and I won’t need it (also £150 for first 3 months + £50 per month after that… but as I said, it’s not like a Netflix subscription which can drop in/out of each month – and it symbolises so many things for me. If becomes necessary, then they should be able to get it in in a week (though we have one step at the top to decide whether to navigate or get a platform built)!

Today, the first piece of ‘prescription’ equipment turned up, but look at the difference between what I imagined was coming when I heard ‘perch stool’ (so I can manage longer in the kitchen), and what arrived (wondering if can joosh it up with some red furniture covering – and make it look a ‘bit less institutional’.

 

So, I’m now learning about all kinds of things – my sofa is apparently too low (so sitting badly), so need to find out what my sofa legs are, and then ReMap can make some leg extenders (better than putting a cushion under the other cushion, as then the arm rests are at the wrong height! I need to look at a cantilever table so I can use my laptop (tempted by light oak version of this), though the perch stool (adjustable height) actually doing quite a good job right now! I’ve been learning all about Dycem, and can look on Living Made Easy for lists of suggested useful equipment. In the bathroom, looking at some kind of swing in/out bath panel so easier to get in/out (though am OK with this – OK, well I’m breathless once I get out), and hoping to move beyond the need for a ‘poo stick’ with a bidet seat (all something I would never have thought about and was wary about blogging about, but conversations – trying to share a sense of the reality). Gradually collecting names of shops where can buy things other than Amazon where possible, including Complete Care Shop… ooo and MotionSpot for more stylish stuff…

And for those of you asking about the broken adjustable bed, which broke 5 months after I received it from the Recliner Factory, the engineer is coming on Monday to fit a new arm. I’m still not clear if they have accepted that all I have done is sleep in/sit on this bed, as there have been strong indications that they think I’ve broken it, and want to charge nearly £600 for the repair! Thankfully, Andrew is helping me with all this, communicating with the store and will be here Monday to talk to the engineer. Look at me accepting help..

Those 3 meetings were all Monday, so I woke Tuesday morning feeling like someone had put a tap in my big toe and drained all the energy out of them.

Lymphedema

I wrote about what lymphedema was when I developed it in my post-surgery arm. I was talking to a friend who said ‘well, your arm can fluctuate in temperatures’, well, yes, but this is now my non-surgery/right arm – so there’s no obvious reason why it should have swollen. This is where I said my weight went up by around 5kg over Christmas (and it wasn’t food) – so I am probably carrying that around in my arm (and a similar amount on my chest/right breast)…

I got a nice swift referral to the rehab team at The Christie, and a 10am appointment (when you don’t typically wake til 9.30am it’s early!) – there’s a limit to what they can do (e.g. could have MLD in normal times), but emergency care allows for appointments for assessment. I was measured for custom fitted compression sleeves (the aim of which is to push the fluid back up towards the shoulder… and then preferably down my back, as don’t want any more fluid collected in my front)… in a choice of black or beige (black shows less marks, right.. and might as well ‘go big or go home’). The sleeve I had been wearing from my left arm had apparently possibly made things worse, but anyway… She also really wants me to have a supportive bra, but I can’t reach round the back, and there’s a limit to finding something wearable and supportive – but I’ve got a couple from Amoena to try out (when I’ve got the energy and breath to take on/off) – meantime post-surgery bra and knitted knocker (rather than prosthesis) – not THE most supportive, but better than nothing right now! Encouraged to practice deep breathing, and told OK to use wheatbags for shoulder pain, although lymphedema doesn’t like heat, so ensure get some heat-free time.

That was Wednesday, and I got a call on Monday to say that my sleeves/gloves have arrived (get 2 – one to wash, one to wear), and the only appointment we could find was 9am Wednesday – so back in there super early (remembered to park a bit closer). She ensured that I was fitted properly with everything, and sent away with instructions to try and wear it every day, to wash the glove/sleeves daily, and a sling for when the arm gets super heavy – but to use this sparingly – need to do flexing exercises on the arm… The roll-on you can see in the middle of the pic is adhesive (as the silicone didn’t work well at holding my sleeve up before – ended up with damaged skin), and the green thing you can see … well..

The lymphedema specialist said she’d never been told this before, but I said it reminded me of what my Dad use(s) to stick his hand up a cow’s bum.

It’s actual job is to help me get the sleeve onto my arm (because I am trying to do it one-armed, although the District Nurse is talking about being able to access someone who comes around for half-hour and helps me get a sleeve on/maybe prepare a quick meal), and then the orange loop can be hooked around foot or door or something, to ease it off (making sure it doesn’t take the rest of the sleeve with you). There’s also a darts and seams to line up, and a big ‘hoik’ to try and get it up the arm!

Definitely seeing it as a learning process – day 1 I put the glue in the wrong place, and spent most of the day pushing the top half back up – producing a bit of a tourniquet effect on the elbow/wrist (although the gloves are custom designed as to where overlaps are expected, so don’t get a double-compression effect. Today, I got the glue in the right place and it stayed up for a couple of hours, then in the afternoon the District Nurse helped me reapply and we got it back up for a couple more hours. I’ll check back in next Weds before my oncologist appt and see how I’m getting on…. Fingers feel a little long on the gloves (for someone who wants to type and use a touch-phone, so excuse my random spellings and typos these days!).

Palliative Consult

My Macmillan Nurse has been keeping a close eye on me, and because having so many problems – referred me for a palliative consultation (a reminder that palliative is about quality of life, not necessarily end of life, although that is part of their remit). A really helpful, thorough and supportive session where we talked through what I understood about what was going on, trying to describe my pain (twangy, kneading, bruised, pin-like, etc. – I have mutli-types of pain) – and what seemed to be working/not working with the meds I have (my document I made the other week seems to be well received by all my new medical team – means I don’t have to remember all my meds, and gives a sense of the overview of the last 3.5 years of what has/not worked). We talked about my recent scans and worries about skin mets – because the CT scan had come back ‘stable’ – the lymphedema is clearly caused by tumour in armpit (so has it grown?), some nodules under the skin on my right shoulder (feel a bit like tree buds) likely all putting pressure on my lymph system. The skin on the front – scans demonstrate that there is skin thickening in response to the radiotherapy … so is the rash also radiotherapy related or is it skin mets … we need to investigate – but if it is skin mets, at least I’ve already started a new hopeful chemotherapy.

We focused on pain, breathlessness, nausea and lymphedema – and talked about options for how we might manage some of these – as they are impairing function! So, we’re upping my BuTrans patch to 20mg, keep going with the oramorph for top-ups, both of which should help with pain/breathing (spoke to Mac nurse this morning saying pain actually worse last couple of days, and she said still needs time for things to work, and that, though it may feel like it, am still on low doses, so there’s places to go). Took on board my desire to be compos mentis, and to be able to concentrate/write – so don’t want to be so drugged up that not really with it.

Over the last few weeks we’ve tried Cyclizine (did improve things but not remove nausea), Haloperidol (no difference), ondansetron (similar to cyclizine, but also ‘blocks the system’ so not so much fun), and most recently, levomepromazine – which is dispensed in quarter tablets – makes you very drowsy + wake up in the morning with a mouth as dry as the sahara. Aside from today (which was probably the port I drank last night), not felt nauseous now on my week’s break from the capecitabine… so not taking any of those this week – and we readdress ready for when I pick up the next prescription next Weds!

We also talked about options for support and care that are available, even if I don’t feel ready for/feel the need for them yet.

Liberate

I’ve been involved in a trial looking at symptom monitoring and information sharing for secondary patients and their friends/family – so had an hour long session on Tuesday feeding back ideas – so that’s another trial ticked off – although I’m looking forward to reading the report!

#BexParty

I enjoy holding online Zoom parties, which bring together people from disparate parts of my life – trying to have every 3-4 weeks, and try and keep the organisation light! Set up a Facebook event, send people the Zoom link (thanks to a friend who gives me pro access to Zoom), then let it go (usually like a drop-in-out houseparty from around 7-9pm) – the topic takes complete random directions, some people happily sit and watch others chatting, some speak up a lot. I find these physically tiring, but it’s the closest to feeling like I’ve got out and about – so really valuable!

Meantime, I’m largely continuing with my TikTok #OpinionMinute, my (very short) daily walks – and most of my day is taken up with managing small daily tasks (and lots of daytime TV!)… whilst also seeking to do little bits and bobs of things that get things out of my head, and seeking to prioritise convos with friends!

To you all, as ever:

Photo by Wilhelm Gunkel on Unsplash

Categories
Digital

Featured in @GeekDadGamer new @TamingGamingDB

Andy Robertson has been my ‘go to’ person for any questions about online gaming, and also we have a lot of conversations about opportunities for people (including young people) provided through the digital. My book Raising Children in a Digital Age, provides the general insight to digital as a whole (for parents, carers and organisations), and Andy’s new book Taming Gaming provides the more specific gaming insights - and comes with an online database, where ‘recipes’ for new games will appear. As the website says:

Taming Gaming is an unflinching look at the impact of gaming on family life by journalist and parent Andy Robertson, drawn from years of covering this topic for newspapers, radio and TV. It compiles the latest research and advice from psychologists, industry experts, parents, schools and children’s charities.

Discover what really happens when a child plays a video game. Face fears about screen time and start steering your child’s gaming from violence, expense and addiction towards fulfilling, connecting, affordable experiences.

You don’t need to be a gamer, or want to play games but to guide your child to gaming health you need to understand the actual benefits and dangers of gaming rather than the worrying headlines and reactionary news.

The second half of the book (and this online game advice library) offers simple to follow, tried and tested Family Gaming Recipes. They are a super-easy way to discover games that are beneficial rather than stressful for your family.

Each beautifully laid out recipe tells you everything you need to know with jargon-free instructions that take the guesswork out of gaming together. Accessing this broad diet of cutting edge games your children will love, enables you to help them navigate this unavoidable part of life.

Taming Gaming sets the bar high for your child’s video game health, with insights from the latest video game research. It helps you tame the games your child plays, by equipping you to make informed decisions, engage in this area of life and guide their gaming diet.

I was really happy to contribute to the book:

Find out more about the book.

Categories
Life(style)

Quoted in ‘3 ideas for living well in 2021’ on 7Minutes by @ChrisGoswami

I ask people a lot to think about what the fruits of the spirit look like online, so was happy to see Chris Goswami pick up on this:

Read the full blog post.

Categories
Cancer

[CANCER] Progress with Capecitabine, and appointment for Lymphedema

Well, this past week or so has gone both fast and slow since I started the Capecitabine… My cousin, who has been cooking, cleaning, etc. for me, had to go back to London after 3 weeks - but has made such a difference having support as try and adjust to this new treatment! We’re keeping an eye on when vaccines might make a difference, or again, she will isolate, test, and travel at quiet time, to come back and give some support. Good for both of us mental health wise…

Capecitabine: A week + in

So, capecitabine is a tablet-based chemotherapy. Assuming that I can manage the side-effects, and that scans show that the treatment is keeping me stable (or even better, shrinking tumours), then every 3 weeks I will return to the oncology unit, have my bloods taken, talk to the pharmacy team about the side effects and how we can manage them, take the tablets home (as I’m a trusted long-term patient, I can be called up if there’s a problem with my bloods, and not have to sit on the ward FOR AGES). I will then take the tablets for 14 days, then have a 7 day break from having the tablets (be interesting to see if the side-effects ease off for that week). Alternate weeks I will have to wait on the oncology ward for blood test results anyway (usually take 60-90 minutes) as I will then have my denosumab injection.

You can see the tablets illustrated here - 4 each morning (9.30am) and evening (7.30pm). They have to be taken a minimum of 10 hours apart, though can be up to 12 hours apart… and must have eaten within the previous half-hour (a friend who’s on the drugs has just said ‘carbs are your friend’ and that a crumpet works well for her!). The pharmacist said - because it takes some time to get out of bed these days - that I can keep some biscuits by the bed and use those in the morning. I do try and have some ‘proper’ meals in the rest of the day - and continue my attempts to ‘eat the rainbow’.

To be honest, it’s been hard to eat at all at some points (and other points get the munchies, even without any steroids) - the Tuesday I started the medication, I just felt a little drowsy, but the Wednesday I started to feel really nauseous/tired, though I was still doing bits and pieces - but avoiding rich food! Saturday we planned to pop out for a walk, but I abandoned my porridge halfway through, and lay down - and then another 4-5 hours of the day disappeared. I thought I’d managed dinner, but just after taking my late-evening tablets (2+ hours after taking capecitabine, so hopefully I ingested that properly), I was actually sick (bright purple, no idea what caused that)… thankfully that’s been the only time so far. Sunday I sent my cousin back to London. I’ve had a lot of conversations with my Macmillan nurse - as we try and control the nausea, shoulder pain, breathlessness (which was paclitaxel related, we thought, but it’s not improving) - and whatever other symptoms need managing. I hope we find a way to manage it all better - because it’s largely hard work at the moment!

Meantime - this Instagram post totally resonated with me … officially it’s 2 years since my first secondary tumour was found, although they think it had been there for 18 months before that… now it’s been 6 months since the large tumour was found … which is definitely causing some problems!

Lymphedema Appointment

Wednesday morning, I headed into The Christie rehabilitation department … by the time I’d walked from the car I was very breathless, so a wheelchair was offered to get me across the hospital - for once, I said yes…

 

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This is not my first trip to a lymphedema clinic, so I wasn’t too surprised at how low tech the process was (and we chatted about this) - the low tech means it’s pretty skilled! After we’d had a chat - which interestingly started with “can you tell me where you think the tumours are in your body” - not because she didn’t know, but she wanted to know if I knew… especially as she’s pretty certain that my swollen arm is caused by a tumour in my right armpit (which has shown up on previous scans) - doesn’t need to be big, just in the wrong place, to cause problems.
I had noted over several weeks since November that I seemed to be collecting fluid in my right breast, my chest, and then on Boxing Day it started showing up in my right arm. I get weighed weekly at treatment so that they can dispense the right amount … I used to avoid knowing, but since the summer (when I lost 10kg of fluid when my tumour was treated), I’m seeing it as a source of data. November onwards I was putting on a kg each week, then over Christmas 5kg - and - no - I don’t do the whole stuff myself silly thing at Christmas… but by this point everyone else could see it in my arm. This was pretty much what it looked like the evening before the appointment (by which point I’m seriously having trouble stretching/ reaching with this arm, including problems with getting clothes on/off):
So, the appointment:
  • Measurements were taken with a tape measure. A computer will do a calculation to work out the difference (but it wasn’t working, so next time). I did say to her that the swelling had been even worse - she said it’s a good sign it had started to reduce…
  • Further measurements were taken so that a custom fit sleeve can be ordered (black or beige, madam? black please). I’ll need to go into the Christie to collect it, usually within a week, but COVID means may be a bit of a delay. I had been wearing the sleeve I had for my left arm, but apparently this is totally the wrong size, and making things worse.. and the silicone on the previous ones had caused issues, so they’ll have to find another way to keep it up. I’ll be entitled to 2 sleeves every 6 months, as they stop being effective after this. She said it will look harder to get on, but should actually be manageable (as I have to get it on myself)… and hopefully start to be effective.
  • We’re also hoping that the capecitabine will shrink the armpit tumour, although the paclitaxel hasn’t. I asked again about radiotherapy, and she agreed that it would make the lymphedema worse.
  • Told to keep the arm as supported as possible with cushions, etc. whilst sitting, sleeping and walking (e.g. hand in pocket, or supported by a big scarf, a bit like a sling). The weight of the arm is putting pressure on the neck and giving me a weird gait when walking = discomfort.
  • When sitting, told to try and keep flexing the hand and getting some arm movement - keep the blood moving… and also to keep the areas highly moisturised with e.g. Aveeno.
  • Struggling to get a bra on (especially with the weight of the prosthesis in it) - but she said keep trying - as want to keep that as supported as possible.
  • Wheat bags and heat pad are fine - might increase the lymphedema, but if it’s working for pain relief. Give areas some heat-free time though.
  • Due to COVID physio/massage, etc. can’t be offered at the moment (there’s people been waiting for this for months) - but she did say there were doubts about how effective it would be for me - as normally arm lymphedema is pushed towards the chest - but I have fluid on my chest - so it would need to be massaged towards my back…
  • Focus on breathing exercises - described it as ‘like a balloon’ - hand just under bra line - feel it inflate as breathe in, deflate as breathe out … and do not be breathing from the shoulders (which it appears I am doing!)

She said that they may not be able to remove all of it, but if we can remove the (extreme) discomfort, and get a range of movement back, then that at least helps. The physio is not convinced that the pressure on the neck is contributing to the nausea at all… although there is also a knot in my shoulder which massage has definitely eased - and that’s also pulling on my neck…

So, I left Christies - where excitingly - all staff should be vaccinated by the end of (this/next?) week - and went home to rest on the sofa (so tired, and also had an HR/Welfare meeting that afternoon).

Managing Multiple Appointments

I seem to be speaking to multiple medics, including new medics, so I spent much of Sunday/Monday writing up a ‘patient history’ as a Word doc - so I have got easy access to dates of different diagnoses/treatments, medications I am/have taken, who I see… and a list of known appointments/current questions - because I am getting totally lost and being asked the questions over & over! Now though, I can print whatever is up to date off (or email it, for those who are in the 21stC), and take it to appointments. Might take some reading on the first appointment, then it’s just about checking later updates. The lymphedema specialist asked if she could keep it, and said ‘good idea’, and my Macmillan nurse has found it helpful so far so… It will next get used for discussion with Secondary Nurse on Monday, palliative/pain management clinic Wednesday, and I’m in the queue for an OT appts too - in case I need some adaptive equipment. Thankfully we managed to sign off ENT yesterday as no longer having nose bleeds and my voice has stopped being ‘stretched’. I don’t know about you, but it’s all pretty exhausting … and I don’t even feel like I’m ‘achieving’ that much .. and it’s all very well people saying ‘you don’t need to’ - but check out my top strength in Marcus Buckingham’s ‘strengths finder’ which I always thought was pretty spot on! Anyways, time for bed again…

P.S. The vaguely exciting thing is that both my hair and my nails are starting to recover from paclitaxel. My left hand also seems to have largely recovered from peripheral neuropathy - right is still plagued because of the lymphedema I think!

Categories
Life(style)

[LIFE] Doing up the house

Cancer, generally, has been a horrific experience, but one thing it has given a bit of breathing space for is largely completing my house makeover. I moved in Easter 2016 (and almost immediately bought the freehold!), and had just completed my own bedroom 2 weeks before my cancer diagnosis - and everything else has been done between and alongside treatments:

The House

The house has some decent curb appeal, although built in the 1970s, it has a bit of a Regency look to it … and - for me - gets a lot of light (mostly in the back in the morning, and the front for the afternoon). We have weird, slightly offset paths, so my garden is not the one with the wishing well in it… Roof has odd flat bit at the front - so got that checked/fixed when I first moved in ..

The garden (s) are the least worked part of the house, my neighbour took down the two large trees either side of the garden as they were blocking most of the evening light; I’ve planted some smaller/cheaper plants in the beds, and gradually added more and more compost, plus the lawn has been kept neat. I tried to keep hanging baskets alive, but tucked away from the weather… I have since gone for Ikea plastic plants!

The Lounge

I enjoyed the look of the lounge because it’s very light - with windows from both ends, but on moving in was quite depressed at how scrubby and dirty everything looked, and that imposing fireplace (though there were questions as to whether that was coming back into fashion) - and very dated heating (but that had to wait til whole house had new heaters in 2019):


I liked the colours in the curtains, etc. though the chandelier wasn’t to my taste - but also I knew that most of my stuff was designed for ‘red’, so the previous owners took all that with them.

I made use of the bookcase bit for a while, then gave that away on Facebook Marketplace. On having a gas check done, the gas fireplace was condemned - not my taste, and not even functional.. but I knew sorting that out was going to take a while. Fortunately I grew up in a cold farmhouse so used to layering up/blankets!

I like to keep my space warm, personalised - but not TOO cluttered. The carpet for this only went down Jan/Feb 2020 - thankful I got that done then! My very ancient TV (thank goodness for Firesticks) is surrounded by furniture that comes from end-of-line sales (including a sofa bed that no one has yet slept on!), and I LOVE my wood-burning stove - that was worth the effort of getting it installed, and the plasterboard which surrounded the 1970s brick craziness!
Very thankful for the patience of my electrician in lining things up (he’s brought the whole house up to legal requirements, and added many more plug sockets!), plumber for installing sweet looking radiators, and my cousin for sorting most of the pictures. I never thought I’d spend so much time in this space, so thankful that it’s so nice! This was a space it seemed worth getting someone else in to strip back the layers of paper on wall and ceiling, and then just paint in a clean WHITE, with the same red that I’d used as a feature wall in my Durham house.

The Kitchen/Diner

This was always the bit that I planned to do the most work to, and was very thankful that as I was undergoing my first set of chemotherapy (when I still thought that I’d have a normal lifespan), some money was left by my great-aunt, which basically enabled all these changes downstairs (including blocking up the door into the kitchen (repurposed as garage door), and installing patio doors).


So, what do we see here - a very small and cramped kitchen, with very little working space, a door taking up one wall, and a wall between that and the dining area…

So yes, here, with lovely Habitat light, and another sale find for the dining area, you’ll get a peak that the wall has gone … although may not notice that the kitchen wall has also gone back about 3/4 of a metre - not very far but makes SUCH a difference to how light and spacious it feels!

Two years after this kitchen was done, still finding it looking quite like a showroom kitchen (maybe a bit more cluttered), and highly functional… my cousin has been cooking in it for 3 weeks and says all it’s missing is a solid fish slice… otherwise have pretty much anything that’s needed in the small space (and a bit of stuff in the garage)…
And there’s all the beautiful Ikea pots - which magically fit (we didn’t pre-measure - it was just the space that was there) … I quite like having the ‘pop’ of colour on there, and a chalkboard to roughly plan what I might eat, and the spice rack for £10 from ebay which is super useful!

The Back Garden/Garage

Always useful having a garage, but it had been stuffed with ‘stuff’, so had lots of bent shelves to take out, and also had to replace the roof which was badly damaged (and the door that kept getting stuck). I still have some of the pots and the table/chairs have been repurposed as garden stands.. have now updated the back fence/gate, and added extra to the tops of these fences - with a bit of repainting - looks good as new…

The most recent addition to the house, in the hope that people can come and sit in a COVID-Risk-Managed way in the back garden (then of course the tier instructions changed) under an awning (maybe round the firepit!). Adding an alarm to the house was also one of the early jobs that I did..

A very random selection of plants and pots - probably mostly from Poundstretcher, B&M, etc - though hoping my B&Q cherry tree might do some interesting things this year - it’s already budding…


I try and keep the garage tidy enough to pop my car in as needed … with a bit of Brexit food supplies - and my old fridge/freezer giving me many options for bulk cooking 🙂

The Hallway

The hallway was fine, if a little bland for my tastes (family pics had been taken down for estate agents!) … also there was no ladder into the attic, so that was one of the first things I changed (along with boarding half the attic, so that a new boiler could be installed)… when we got round to the hall I had a few friends round peeling off the bobbled wallpaper - with ladders borrowed from neighbours!

The lighting was badly placed, so got that moved - at one point had a beautiful collection of baubles, but 3 of them smashed and I couldn’t get replacements, so gone back to a simple light frame… and many pictures! And after debating a custom-built bookcase, I found a cheaper option with these small Argos cases - and painted the backs white for the benefit of the stairs..

The final job, thankfully done shortly before lockdown, was new carpets for stairs/hallway and lounge… very happy with colour and bounciness!

The Master Bedroom

The previous owners did say that this was the room that they’d never really got to.. I’m not sure who needs that many wardrobes but .. it took around a year to get round to this room:

After my cousin and I smashed the wardrobes out, I stripped what seems like about 6 layers of wallpaper off, and some very plasticy paper from the ceiling (where I can still see wardrobe lines, but anyway), then at least 3 layers of paint, my old spare room curtains - room feels loads bigger, very functional - and again, furniture largely from end of line places and Ikea!

Oh yes,that stonking great big adjustable bed .. from Recliner Factory (currently awaiting fixing). Very thankful that this room, including TV at end of bed, was completed a couple of weeks before my cancer diagnosis (also added built in bookshelves/shoe cupboard).

The Spare Bedroom

I slept in this room pretty much as is for the first year, whilst sorting out the master bedroom. Inbuilt wardrobe very useful - nice spare room - but sun comes up this side, so am happier on the other side of the building!

And now it is hopefully a welcoming space …

… although are competing somewhat with some bits of storage, photographs, and ironing board/washing stands etc are all used in here when no-one else is in! Dries well with that sun streaming in in the morning 🙂


The Office

This was part of the appeal of this house … my last house was 2 rooms, and as I work from home quite a bit (isn’t everyone these days), love having a space I can shut the door on at the end of the day…


And there it is, very neatly set up - and every academic’s dream - whiteboard and built in bookshelves … don’t know if whoever comes after will want them but… and yes, that’s my bookcovers nicely framed!

The Bathroom

The bathroom was fine, although nothing was exactly my taste, but it was pretty functional. I’d done the bathroom at my previous house, so still had some ideas from there that I was happy with…

I really like the half-tile, half-paint look, and the white means can play with accessory colours. What with all the cancer meds, it’s maybe a little more cluttered than I’d like, but it’s a good space.. and my toilet is twinned of course!

And this shower is awesome (makes a difference every day) … and managed to turn an empty old airing cupboard into a set of shelves which removed wheeled trollies full of stuff (I mean, I still overflow into the spare room, but it’s a good use of space)

Still to do:

So EVERYTHING has been freshly painted, boiler/heating updated, electricity made safe/updated… amazing what you can do on a tight budget! There’s always a few small bits and bobs to keep on top of, as well as general maintenance (especially of the lawn/garden, and paint touch-ups). I abandoned the idea of applying for Garden Rescue or one of those kind of programmes, as need to put money forward for these. However very small list still to do:

  • Remove brass ‘door furniture’ and replace with Chrome
  • Strip back outside pillar to base layer, and repaint white (I’ve already repainted the walls and pillar once, but guess it may be a recurring job)
  • Drill water hose brackets to wall (back garden)
  • Drill planters, clock, temp bracket, etc up in back garden.
  • Lounge - curtain hook - swap middle hook for right shape
  • Lounge - skirting boards left exposed old paint
  • Kitchen - get filler to stay on kitchen surface
  • Consider new blinds (current ones quite grubby)
  • Bathroom - fix slidey toilet seat
  • Master bedroom - remove gloss paint spot from curtains (or replace curtains?)
  • Doors - some need a bit shaving off as carpets catch on them
  • Boiler - have lost access to my gas fitter, and overdue it’s annual service

Everything else is about decluttering, tidying, keeping eye on the guttering, roof, and front could be repointed but that’s a cosmetic thing.