Tag: Stepping Hill Hospital

Categories
Cancer

[CANCER] Week 3 of Treatment: Plodding Along

And there we are, another week has passed since I blogged, so I’m now 3/18 treatments of the current plan (before I get scanned, and we see if this drug is doing anything, and if it is, we keep going).

Friday/Weekend

So, still making sure I get out for that little walk every day (Fri/Sat – with a ‘Bear Hug‘ in the post) – some days it’s 1500 steps, some it’s more … all feels very short compared the 8+ miles used to do on hikes, but I guess that’s where we are now!

 

View this post on Instagram

 

Went for lunch, a short walk, and a socially distanced oat milk hot chocolate at @thegherkinlevenshulme #BusyLivingWithMets

A post shared by Bex Lewis (@drbexl) on

Still going to bed pretty early, and knocking myself out with morphine and zopiclone!

Monday

And there we are, another treatment day … arrived around 10.30am, called in for chair around 11am (with my Stage 4 Deserves More mask):

  • Spent most of the session watching a film on my iPad (something with Adam Sandler/Jennifer Aniston in), and phone chat to Occupational Therapist from Maggies about things to look for re reasonable adjustments at work.
  • As always, chats with nurses and pharmacy about side-effects… which includes continued numbness in most of my right hand, really bad skin, and blowing blood clots from my nose…
  • No big changes this week, aside from adding Flucloxacillin to the meds mix to deal with toe infection (it’s part of the reason people undergoing chemo are discouraged from manicures/pedicures, as we’re more susceptible to infections from minor cuts)… this antibiotic is a real pain as have to take 4 times during the day, but 2 hours after, and 1 hour before food…
  • Skin breakouts are pretty bad, but we’re talking more about that next week – antihistamines giving some relief, but not enough yet! *I was having a go at Instagram Reels which highlights the glamour…

As I remember saying about primary chemotherapy – it’s not the big vomiting, etc. that the media shows you – but a myriad of small side effects, any of which are irritating on their own, but together, and knowing that it’s long term, make them hard to try and deal with!

Tuesday

Another soggy day, but still popped out for a walk, once my Asda delivery had arrived/been put away – but mostly relaxed:

 

View this post on Instagram

 

Got that little walk in – found my cycling waterproof trousers … only 0.6 but anyways … and more post 😉

A post shared by Bex Lewis (@drbexl) on

Wednesday

Woke to the news that Sarah Harding (Girls Aloud) has advanced (aka metastatic, incurable) cancer – sorry she got forced to share the news, and here’s to good treatments and support, as for all of us:

I had some more lovely post – Betty’s Fat Rascals, and ‘permission to rest’.. went out for another little walk – and also was on BBC Radio 4 – World At One (again talking about cancer/COVID):

This was also ‘day 17’ post my first chemo of this set … and in the shower this morning as I ran my hands through my hair, I was left with quite a lot of hair on my hands … I may be lucky it may just be thinning, or it may be the start of it coming out… who knows. Another thing to be patient about!

I also had a go at Maggie’s relaxation session via Zoom – others in the group said that Lisa’s voice went faint at one point – maybe I’d fallen asleep in that LOL!

Thursday

Had a little bit of energy today, so sorted out some washing, and some other bits/pieces of housework (my cleaner is still not well ? ) before heading out for a walk with a friend, and back for a Zoom with another friend, and making some cheese sauce:

 

View this post on Instagram

 

Having a bit of company makes it easier to walk a little further. #BusyLivingWithMets #paclitaxel

A post shared by Bex Lewis (@drbexl) on

Friday

A day which feels like it’s got quite a lot in it, considering … a conversation with occupational health (she is very clear am not currently fit for work (aside from bits/pieces I might want to do), and will be signed off beyond my current date of 11th Sept – which is no big surprise to anyone, and wants to talk again in 6-8 weeks and see if have settled into a routine with the chemo); then another 4000 step walk, then it was time for counselling (where I was tired, and slurring somewhat), where we talked about Maslow’s hierarchy of needs, and that focusing on the bottom steps is where I’m at at the moment:

After the District Nurse had visited, and I’d sorted out a couple of bits and pieces, I was in bed by 6pm – and started watching The Umbrella Academy which am enjoying, but fell asleep in the middle – had set an alarm to take my last set of meds, and then crashed out again til about 8.30am 🙂

Saturday

Got up early ready to have boiler serviced, but think they have forgotten me … and as I’m heading to my bubble family to enjoy Greenbelt, ah well, have to rearrange! Started the day for #GB20 #WildAtHome with traditional bacon sandwich:

 

View this post on Instagram

 

It’s #GB20 #WildAtHome bacon sarnie for breakfast …

A post shared by Bex Lewis (@drbexl) on

And getting prepared for hair loss (thank you Sarah):

And rather gutted to hear (but also amazed at all he managed to achieve with Stage IV cancer – though hope that doesn’t put pressure on the rest of us) – still struggle with the fighter narrative though – must listen to Andrew’s thoughts on this for BBC:

 

View this post on Instagram

 

It is with immeasurable grief that we confirm the passing of Chadwick Boseman.? ? Chadwick was diagnosed with stage III colon cancer in 2016, and battled with it these last 4 years as it progressed to stage IV. ? ? A true fighter, Chadwick persevered through it all, and brought you many of the films you have come to love so much. From Marshall to Da 5 Bloods, August Wilson’s Ma Rainey’s Black Bottom and several more, all were filmed during and between countless surgeries and chemotherapy. ? ? It was the honor of his career to bring King T’Challa to life in Black Panther. ? ? He died in his home, with his wife and family by his side. ? ? The family thanks you for your love and prayers, and asks that you continue to respect their privacy during this difficult time. ? ? Photo Credit: @samjonespictures

A post shared by Chadwick Boseman (@chadwickboseman) on

And remembering that tomorrow is 3 years since I was first diagnosed with primary breast cancer … it has been an exhausting 3 years!

Categories
Cancer

[CANCER] Moving Forward Course with @BCCare

So today, I’ve just finished the ‘Moving Forward‘ course run in partnership between Breast Cancer Care and hospital trusts (Stockport in my case). For 3 hours over the past 4 weeks, around 12 of us have gathered in a (rather hot and stuffy) room at Stepping Hill Hospital to think about where next. In the past, people used to finish hospital based treatment and effectively ‘waved goodbye’, but this is the point at which help is needed – as the survival tactics that have kept you going throughout everything, and the regular rhythm of appointments, have disappeared … plus everyone thinks you’re through it, and assumes that you’re going to ‘go back to normal’ (if there’s ever such a thing!)

Week 1: The Menopause and Lymphedema

The information here was very similar to that from the Younger Women Together event, but it was useful to have things reiterated as the treatment to bring on early-chemical menopause (and all it’s fun side effects) is about to start. Managed to avoid lymphedema so far, but it’s a lifetime risk, with 1/4 likely to get it post surgery (I can see from others it’s not the end of the world, but it also brings with it more hospital appointments, and a need to manage it, so reducing risks is key).

We were given a ‘Moving Forward‘ book to take home and read at our leisure, and were shown a couple of graphs normalising the fact that recovery is not straightforward – one is in this article and the following diagram demonstrating that as physical health improves, the mental health has to work harder:

I did discuss this diagram with my counsellor at the Christie a couple of weeks later, because it seemed to have embedded itself into my head that part of the process will be having to fall off a mental health cliff, and that, in many ways, is more scary than any thoughts of cancer recurrence (yes, there’re there, but if you’ve ever been down a depressive hole, you’ll understand!).

Week 2: Symptoms & Services

The second week focused upon the symptoms to look out for in the case of a possible recurrence (something we all fear) in a way that sought to emphasise that it’s not a given that it’ll come back but that we need to become familiar with our new shapes, and highlight anything that’s not normal. There was a discussion between those who felt every symptom was possible cancer, and those, like me, who don’t like to waste people’s time, but also don’t want to leave it like I did last time… general advice is that if it’s obvious then get it checked, if it’s something else, then 2-4 weeks is a reasonable timeframe – and continue using the BCNs for advice (even if they are seriously overstretched!). One tool recommended by someone in the group was the CoppaFeel Remind Me App, which will send you a text once a month to check for anything unusual (same as the rest of you should be doing, as the earlier this stuff is caught…).

We then talked through the range of services that Breast Cancer Care provides, including the BECCA app (which John Knight from Big Lottery Fund mentioned to me as being super impressed by the research it was based on), and also a host of other online and local resources that we can tap into, including counselling, retreats, podiatrists, freebies (I’m looking forward to urban axe throwing which I won via Ellie’s Friends)…. Breast Cancer Care finds that this information can be patchy depending upon which hospital you’re seen at, so are looking to create (well, update) their list that can be easily circulated.

Week 3: Counselling and Lingerie/Prosthetics

In the third week we got the opportunity to talk about the things that worry us/make us anxious (it’s helpful to hear you’re not alone in your fears!), including managing expectations of other people, recurrence, having a short fuse, etc. We talked through how normal most of these are, some ways of managing anxiety, including the 5-5-5(-5) breathing technique.

We then had the super-enthusiastic Geraldine Hurd, from Betty and Belle in Altrincham, a lingerie designer for 20 years, who went to volunteer for Macmillan and discovered the dire state of post-surgery bras and swimwear. She set up the shop 11-12 years ago, and people travel from all over the country for fittings as they “specialise in fitting women who are traditionally difficult to fit”. There’s definitely a massive range of products out there, and they’re not all granny bras!

Week 4: Fitness and Relaxation

Today, we met Claire from Stockport’s PARiS scheme (which I have engaged with, but post-radiotherapy fatigue, and decluttering have taken precedence, but I can reboot!), did a few chair based exercises with elasticated stretches, and talked through the possibilities – and I was not the only one to feel like we used to be super-fit, and now have to start again (and I’d just been doing that pre-diagnosis) and there’s a real danger of over-stretching – but that’s the point of the scheme.

We then had Colette from Beechwood Cancer Care, which I’ve not engaged with (been to Maggie’s, which sounds similar), who gave us a guided visualisation (something that, along with mindfulness, I still feel pretty rubbish at), talking about ways to manage anxiety, and also the things that we can do at Beechwood.

Final @breast_cancer_care ‘moving forward’ session. #classyselfie

A post shared by Bex Lewis (@drbexl) on

Apparently what is done at each of these courses is different, partly depending upon availability of experts.

Categories
Cancer

[CANCER] Further Surgery #BreastCancer

This afternoon I signed yet another consent form, though I was pleased that ‘death’ wasn’t listed as one of the side effects this time… just possible allergic reaction, etc. etc. – oh and likely slow healing of the wound due to chemotherapy.

Surgery During Chemotherapy?

Cancer teams are not keen on any form of surgery during chemotherapy, and I’m nearly 2 weeks past my last chemotherapy treatment (which means that next week I’m officially halfway through the chemotherapy phase of the treatment), because of the infection risk. During my first chemotherapy, whilst undertaking scar massage, I felt another lump on top of the mastectomy site. I left a message with the BCNs (Breast Care Nurses), and they had me in the next day. Another physical exam in which they swiftly said that it was likely one of three things, none of which were cancer, followed by an ultrasound which confirmed that it was most likely a ‘lipoma‘ (fatty lump). Told to come back after the next chemo round if still there to have it double-checked, at which point they decided to take it out and biopsied to be sure, but we had to find the right timing around chemotherapy (on the first cancer drug the first two weeks are where I’m most at risk of infection, including neutropenic sepsis, so cutting the skin introduces a higher infection risk). As my next chemo is 2nd February, and my surgeon does all his surgery on a Thursday, my oncologist Dr C agreed that it could be done today, subject to white blood cell counts yesterday.

Hospital, Hospital, Hospital

This week I’ve been in the hospital every day – Monday was a refit for the prosthesis (I’ll blog on the joys of finding a fake boob that fits at some point – as we joked, it’s like the Wand Shop in Harry Potter – the boob chooses you!), Tuesday was an MRI scan to check something that showed up on my spine – in the CT scan I’d had the week before to check something on my lungs – the lungs are thankfully clear, the MRI we’re still waiting on results. #Scanxiety is a real thing I can tell you… and I suspect this is not the end of all these scares… Yesterday I had to go in to have bloods taken (via my portacath, which only some people know how to use), and then today I was back in the waiting room – Ward D5 this time, waiting to have the lump removed for an ‘excision biopsy’, accompanied by some stress after a phone call last night indicated the MRI test results might be back … they are not!

Waiting … and Waiting

And waiting room is the right word… Thankfully accompanied by my good friend Andrew (was told not to drive home from this operation too, so also provider of lifts as well as company). We arrived just before 12, handed in the registration form, then sit and listen out for ‘Rebecca Lewis’ (oh yes, one can only train the regulars to call me Bex, and my surgeon has never learnt that. I’ll forgive him, as he’s lovely, whilst also being pretty clear about what’s going on, and done excellent work on me!). After about an hour, get called into see the nurse, blood pressure, temperature, more paperwork (name, dob, address parroted out once more, and the addition of various wristbands (like going to a festival, but less fun!):

The anaesthetist also popped in to explain the sounds and sights I’d see, as this surgery is quick, done under local anaesthetic, so I’ll get to see the theatre I had my main operation in (which clearly I slept through!), so that I wouldn’t be freaked out, and then they said take another seat for another 30-45 minutes when ‘Mr D‘ (my surgeon) would come up with the consenting paperwork. All this time I’m wondering if I’m getting my scan results! Mr D arrives, impresses Andrew with the fact that he knows who I am, shakes my hand, asks how I am, does the same to the woman next to me (who I then get talking to, of course!), then goes to get my paperwork. Tells me straight away that there was some confusion leading to the phone call, no scan results are back, but hopefully they’ll be back on Monday in time for the MDT meeting, so next week! He then makes sure I know what’s going to happen, identifies the potential risks, I sign (including my date of birth instead of today’s date, but you know…), take a seat again…

Pre-Op

Then taken to a room by one of the nurses, who then comes in with a basket for my clothes, get to put the LOVELY gown on, lock valuables away, etc. and I’ve not long to wait – although time for a conversation with the three other ladies in that waiting room – all waiting for leg surgery! Then it’s time for ‘determined face’ on, accompany a nurse down the lift into the waiting area for the operating theatres (same bed as last time – apparently relates to the theatre) – and note how much hair the cold cap is causing me to keep (though I can’t wash it often, or style it at all aside from one brushing a day so..)

After double checking all the information on most of the forms, and name/dob/address again, head into the theatre. I’m quite excited to see what this looks like to be honest, as Holby City/Casualty is my only reference point otherwise! Those big theatre lights are up, there’s lots of people in there, the tray is being loaded up, and I’m asked to get up onto the bed (which has a weird jelly sensation). It’s pretty cold, so soon covered in a blanket, lots of lovely people checking I’m OK, staff double-checking bits of paperwork, etc. Sam (medical student) pops up with an arm extension to the table, and there is a layer of jelly for my arm to rest on + various absorbent papers for whatever gunk is about to go on me.

The Operation

Then we’re ready to go, Mr D explains what he’s doing as he iodines the area, places the blue sheet over the area (they nearly forgot to take it back off my face – nice to have a laugh mid surgery, right), local anaesthetic goes in, checks I can’t feel anything.I reckon what follows was about 10-15 mins of various tugging sensations, fizzing of cauterised skin, etc plus bits of conversation over and to me, before Mr D asks, “I don’t suppose you want to see it”. I’m curious so, yes please, and something that looks rather like a very large baked bean is held up (I reckon just over 1cm circumference, less than 2cm long)… and then I’m being stitched up. Then it’s back off the table, check I’m not dizzy, but taken up in a wheelchair anyway. Get to chat to the woman who was next to me in the waiting room as she’s in next.

Post-Operation

Then head back up to the ward, where BP/temperature checked, check that the dressing is good, loaded up with water, and given painkillers for later, plus spare dressings for the week, plus an appointment to come back in a week to check healing, etc. Get chatting again to the women in this room, where they’re still waiting, before being told can get changed and head home:

A post shared by Bex Lewis (@drbexl) on What Now? A Life of Distractions

So now it’s all about waiting for the MRI, and getting ready for Paclitaxel next week (new drug, new side effects). I’ve not taken any painkillers yet, though I will as I head to bed, just enjoyed the support from people via social media, etc. and chatted to a friend on FaceTime. Once I got past the dizzy/nausea stage of the first week of chemo, mostly been left with tinnitus and indigestion – along with fatigue. I tell you, this cancer, it’s right glamorous! A friend sent a message this morning about surviving endurance training … and that is pretty much it – it’s lots of little things, appointments, scares, side effects, which add up to a whole heap of stuff but on their own they sound stupid! I’ve gone back to work (aka study leave at home working on research, I’ve got plenty that I want to do) after each chemo, but not this one, when I’ve enjoyed planning out what needs to be done to my house (it’s a good distraction!), especially a new kitchen (yeah, I’m not very good at the software, I’ll let the experts take the measurements/starting ideas and create proper plans)!

Other Cancer Thoughts/Useful Info

I like this post from Maggies about ‘how to talk about cancer‘, and here’s some things from Lush that might be useful to give friends who are undergoing chemo (for hair, face, spots, dry skin, etc.) … with a longer list via @tickingoffbreastcancer: HOW TO HELP SOMEONE GOING THROUGH BREAST CANCER TREATMENT – you might recognise some that I’ve had, as we have chatted via YBCN (please direct any woman under 45 who’s been diagnosed to the associated excellent Facebook group, whilst I also find the people in here lovely too).

Oh, and you know I feared ‘chemo brain‘, here’s what it is:

  • Difficulty remembering facts (e.g., people’s names, important dates)
  • Trouble finding the right words or finishing sentences
  • Struggling to concentrate or learn new skills
  • Getting confused easily
  • Finding it hard to multitask