dsa1980

[dsa1980]

I’ve been terrible at updating this blog, sorry. Life’s been v busy working & covering an additional job for a couple of months whilst waiting for my new colleague to start plus just being me which means I fill every hour of every day with ‘stuff’!

In the meantime I’ve just finished my 2 weeks of lying on this wierd bed every day. Radiotherapy is bizarre as you feel nothing and there’s just a quiet buzzing when the machine zaps you. Coming to the hospital every day is pretty boring but feels safe at the same time.

It’s gone really quickly and so far my skin is ok (the effects can start over a week after I’ve finished so I’m trying not to be cocky!). However swallowing is now quite uncomfortable. Feels like every mouthful of food is too big and hurts going down like I’ve swallowed a golf ball. Apparently fluid paracetamol will help (as it’s uncomfortable to take tablets) so now waiting in the hospital for them to prescribe it.

I’m restarting my oral chemotherapy (Capecitabine) next Monday so still on treatment but the intense bit is now over.

You’d think I might feel a sense of relief but I don’t.

It feels like an anti-climax, months of waiting and agonising over a plan, trying to prepare for what’s next and not knowing.

I think I’m nervous of finishing treatment as effectively I feel like I’m just waiting for it to come back (and a recent conversation with my surgeon implies it may not yet have all gone anyway - I need another PET scan to be sure so that’s the next fight I have - to argue for one of those. They’re a LOT more expensive than a std CT scan so aren’t offered routinely). I’m still in a position where the 2 hospital teams are reporting different situations to me. My surgeon has said she’ll look into it but it’s very frustrating to not really know whose reports are the ‘truth’.

I don’t know how long I’m on the oral chemotherapy but it feels like a safety net and whilst it will make me tired and affects my immune system that feels like a price worth paying for longer with no new cancer.

Life’s a funny old thing, none of us know what the future holds but having to shift my perspective from planning for years ahead to making the most of now and planning mainly for the immediate future takes a lot of getting used to.

In the meantime as usual I’m still v busy (although am having a lot more opportunity to sleep as I’m now off work I’m sick leave at least until Jan) which keeps me occupied and I’m planning my 40th year trip to Japan. That’s a job in itself!!

It also appears that contrary to how I feel, Christmas is still coming so Alfie and I wrote to Father Christmas last night so that he can ask for a present. Not sure where the idea came from but he’s asking for a “scooter, a dark blue one”. We’re trying to persuade him that light blue will be ok too as that’s the one we’ve found!

[dsa1980]

A small celebration.

A very quick update having just left my oncologist appointment.

My CT scan shows that my nodes are ‘all within normal range’ and apparently that means there’s no visible cancer in them so the chemo has worked despite me not having the last one of the cycle.

I’m still not able to have surgery as they feel that there were too many areas affected to do this without being too radical, but he seems to agree with / be resigned to that option as radiotherapy should be successful in killing any stray cells. I’m getting a referral to radiologist but not sure how long that will be. My old radiotherapy oncologist has retired so I’m seeing someone else.

This is all really good news and feels very positive. What I’m now grasping and pretty much resigned to is the fact that unless treatments progress hugely and very quickly, I’m effectively going to be on treatment forever, albeit with (hopefully) months, maybe even a whole year or so off.

He thinks the current treatment and radiotherapy should be enough to knock it back at least for 12 months before a recurrence and could be longer. He seemed a lot more positive than the doctor last time about the amount of options for treatment that I have.

I’m back to see him in 3 weeks to see how tablet chemo is going.

For now I’m celebrating the fact that I am currently cancer free, and I have a cancer that is receptive to chemo.

[dsa1980]

This image appeared on my facebook memories this week.  It was 3 years ago when Graeme and I went on the most amazing holiday ever, 3 weeks in California driving Highway 1.  Whilst the picture meant something very different then, it is a good metaphor for how i feel at the moment.

A huge, scary evil looming behind me, potentially waiting to pounce and get me, but at the same time i can assume that it’s safely attached to the floor so can’t reach me, or can it?

Is my assumption niaivity or is it a real possibility?  

Effectively this is what is happening to me now.  Much like Darth Vader in the picture, i know that what is capable of killing me is right there, but I keep hoping that it won’t.  That someone or something is holding it at bay.

I am sorry for those who might read this blog as a way of keeping up with whats happening that i haven’t updated it for a while, but apart from being tired (and lazy) I haven’t really known what to write as i don’t know or understand what is going on myself.

I had a CT scan almost 2 weeks ago and the day after saw my oncologist’s team.  I saw a regsitrar rather than my consultant and came away disappointed, super confused and terrified as did Graeme.

She explained that i wasn’t going to have any more chemotherapy as my body can’t handle any more and the marginal benefit of having one more was outweighed by the harm it might do.  This left me disappointed that i wasn’t able to finish the full course and that I can’t throw everytthing they have at the cancer, but thats just the way it is.  She also, understandably, couldn’t tell me anything about my next lot of treatment without the results of my CT scan (which I now have an appointment to get this week) but when i asked hypothetical questions about treatment and vague prognosis, not only did she give me no answers, she refused to give me any reassurance or any feeling that there was a chance of a positive outcome (on reflection and with a more logical mind, she also gave me no reason that this couldn’t be the case).  She also spent enough time with me to be able to better explain the reason that the MDT at Wythenshawe were not prepared to operate and part of the reason for this is that the scan before chemo started showed that not only was there a lymph node affected in my clavicle (and my chest), there is also one in my neck.

It is the ‘spread’ to my neck which she says means that i am, and always would have been regarded as ‘Secondary’.

This left Graeme and I terrified.  

To us, secondary means incurable.  This, combined with the lack of reassurance, or the refusal to talk worst case / best case scenario meant that we walked out of the meeting like zombies.   I couldn’t think of anything other than leaving Alfie and how that is not something i can contemplate.  How does anyone come to terms with that?

The more i thought about it, the more i didn’t understand how a normal consultation (i.e. not one following a scan or other results) could turn so negative, and with no emotional / practical support (usually a Breast Care Nurse specialist joins Drs on ‘bad news’ appointments).

On reflection, with some support and advice from some amazing ladies in the Badass Boobie Bitches, (the breakaway online support group of ladies i went through treatment with last time) I have come to realise that actually my situation is not really different to what i thought it was before.  There is still a chance that chemo will have blasted what is visible away, and with surgery and radiotherapy i could get to ‘No Evidence of Disease’ (NED) and if so, whilst it is likely that it will recur, i should have some stability in the meantime.

Even if chemo hasn’t done this, and i can’t have surgery, I will still have radiotherapy (which will be more ‘radical’ than if i have surgery) and this may get me to NED.  

If (more likely when) it recurs, if it spreads, it could spread to an non-lethal area area, like friends of mine have had e.g. skin, muscle or blood and they have got to NED from these areas.

The only way i can deal with the future is by forgetting whats going on and assuming it will be alright.  I don’t see another option for me, but each appointment opens up the possibility that i will have some real reason to have to face something else.  It’s crap.  I hate it, but thats just how it is.

It’s my birthday this week, but whereas normally i would have been excited and anticipating it, i couldn’t even remember what day of the week it was as all i can think about is my oncology appointment on Thursday.  I know i won’t get a treatment plan then (as they are highly unlikely to have received the CT result in time to get it to Wythenshawe to be discussed and the report back to the Christie) so it still won’t give me all the answers, but it will show how well or not chemo has worked.  This ultimately will give them more of an idea what they (and I) am dealing with and the liklihood of me being able to plan for my (near) future.

I’ll try and update on the result of that afterwards, but it entirely depends how i feel.  Writing these blog posts can be quite emotionally draining as it makes me relive emotions and in some ways, having things in written format makes them more ‘real’ and that can be very scary!

[dsa1980]

I’m free!

Driving home as we speak.

I’ve got 5 days of antibiotics to take and another injection for tomorrow to further boost my white blood cells.

Thank you for all the well wishes they’ve definitely worked!

I need to call my oncologist’s secretary in the morning to ask her to find out what’s happening with my chemo. Hoping I can have it on Friday, but we’ll see.

[dsa1980]

Last Chemo - computer says no

Well, replace “computer” with “body” and you get the picture.

I was hoping to have been embarking on my last week of severe side effects and a gradual improvement of the lingering ones this week, but thats sadly not be the case.  Instead, i started writing this post looking at this view:

Not only did i not get my last chemo, but I have been in hospital since Thursday night with a high temperature and the earliest I will be able to leave is late Sunday evening.   On top of not having had chemo it also means that i’ve only been able to see Alfie for a total of about 2 hours in total since i put him to bed on Thursday.  That is killing me.

Admittedly I had just finished a rather strong (4shots) margarita (my excuse is that i was using up the leftover lime juice that would otherwise have been thrown away) but despite feeling completely well all day I suddenly got a headache after dinner, and then Graeme noted how hot I felt so I thought that just to be cautious I should check my temperature.

I did, and it wasn’t pretty.  I tried a couple of different thermometers, both ears, my mouth, waiting for 15mins being still to try and cool down, but it was consistently above 37.6 (I have to call the hotline when its above 37.4).

I’d started to feel really tired, and given that I had been admitted just 3 days earlier (with a temperature that they put down to my white blood cell injections) and got no sleep at all, I really didn’t want another night in hospital.  I thought that a good night sleep and some paracetamol would make me feel tonnes better, making me well enough for chemo, but the hotline wanted me to come in to get checked out.

By the time I got to the Christie it was about midnight, we had to be let in by security and i walked straight into a set of obs, blood tests and 4 failed attempts to get blood out of my arm (they have to take blood from my arm as well as my port to make sure that the infection isn’t being caused by the port itself) . Eventually they succeeded, I was given intravenous (IV) antibiotics and just after 1am Graeme was able to go home to relieve Alfie’s very kind emergency babysitters.

Whilst needing a really good sleep and rest, to try and get better, unfortunately I didn’t get that.  The ward was crazy busy and noisy.  I had the “joy” of listening to an elderley lady have the cather insertion procedure she was experiencing explained in step by step graphical detail, another lady (legitimately) complaining about the pain in her leg and bladder for hours, but most upsetting was the lady in the bed next to me.  It turns out she was about my age, (or not much older) and she was VERY poorly, they struggled to cannulate her, she vomited (on the side that was near me) violently for several minutes, had a couple of small seizures and although she was barely conscious was obviously quite uncomfortable.  The very hardworking clinical team were with her most of the night but that meant they were also next to me albeit with a thin paper curtain separating us.  This added to making it difficult to sleep because they were discussing her case and I could sense them moving around all the time, but also because of her age, it was just too close for comfort for me.  Seeing her terrified relatives was heartbreaking.

Not surprisingly, results in the morning showed that my neutraphils (a type of white blood cells) were low and so to give me more chemo would be too dangerous.  Instead i would stay in hospital on IV antibiotics twice a day; incoveniently one of these is at 1am so i have to be woken for them :(  This continues until my temperature has stabilised and i can go onto oral antibiotics.  Even when that happens (hopefully tomorrow) I have to stay here for a few doses to make sure my temperature doesnt rise again.  It’s still 37.4 now and whilst stable, it’s still high, so i could be here a while!  The earliest I can expect to go home is late tomorrow, so please keep everything crossed for me that this happens as really don’t want to be still here on Monday.

[dsa1980]

Still living in the unknown

Not a very informative update but an update nonetheless.

I’ve just seen my oncologist (after a 2.5 hour wait) and other than knowing the week of my scan appointment and a date to see him for results, i am still no clearer on what comes next.

There are several reasons for this and I’ve come to almost not care. I can’t control it and I’m fed up of planning and thinking about the what ifs.

Positive is that there will be a period of about 3 weeks when I’ll only have a scan and no other hospital appointments so hopefully we’re able to have a week away somewhere.

Sorry it’s both boring and still nothing clear!

[dsa1980]

So, I was cocky, “I cope really well on chemo” well that’s true, but I hadn’t factored in catching a cold from a toddler.

Initially it was fine, I felt a bit snotty over the weekend but yesterday I went downhill and my temperature was rising very quickly.

I had to come into the Christie for loads of tests and they decided that as my heart rate was high, I needed to stay in overnight and have a chest X Ray.

That was a nice awakening at 5am - having had very little sleep in a bed made for midgets - I couldn’t stretch my legs out! Being asked to get in a wheelchair and put a gown on then told to hug a big metal machine!

Anyway, I’ve seen the Consultant now and he’s happy I am well enough to go home which is good. Please keep everything crossed for me that my blood results stay good enough for me to have chemo on Friday.

I only have 4 left and a delay takes me into September which psychologically is not good.

Let’s hope this is a one off! (Bloomin’ toddlers!)

[dsa1980]

I ’m half way through chemo, I’ve had 6 of 12 now and to celebrate we’re off camping!

Well that’s not strictly true, we’d booked this date in a year ago with friends who have very busy diaries and I was adamant cancer wasn’t going to get in the way.

So chemo isn’t fun but my side effects have been well managed in the main.

My first cycle I felt sick as a chip, it was distracting I hated my port, it was uncomfortable and I generally felt properly fed up.

As each one has gone on I’ve felt psychologically better and am taking a medication that’s managing the effect that the chemo is having on my digestive system so I’m not feeling sick. The worst thing is that for the last 2 cycles I’ve had no let up on the fact that my taste buds don’t work and make food taste either of nothing or really unpleasant. That means it’s probably staying like this for the next 2 months but if that’s the worst I have to deal with I consider myself lucky as some people get hospitalized with neutropenia or have severe pain or sickness.

I’ve been managing to work, almost as much as before I started treatment albeit from home and around all the medical appointments I’ve got. Work have been amazingly supportive and I realise how lucky I am for this as so many people I know have pressure on them from work which means they just end up being off sick. I enjoy my work and am grateful that I am able to still feel and be useful rather than sitting at home with my own thoughts and daytime tv!

Since I last blogged I’ve found out a bit more about my situation and treatment plan but I’m still living in limbo land.

Basically some oncologists would consider my situation as secondary cancer, to be managed not cured. This is mainly down to the fact that it’s not in its original site and as drugs have been improving all the time there’s not enough data or people who’ve had my drugs to see what their recurrence or survival is.

When I asked my oncologist if he was treating me to cure me or treating me to manage the cancer he replied that his aim is to cure. This is why I’ll probably be having surgery after chemo, then maybe radiotherapy and maybe more chemo. So still vague but clearer.

I’m taking that.

I’m prepared that this might happen again in a few years as I’m now at a higher risk of recurrence but as long as I get to see Alfie start school by then drugs will be different again and eventually there will be a cure.

I plan to live every moment and make loads of memories, which is something we should all do anyway, it’s just easier for me to realise why it’s so important. That’s why we’re off camping, even though it’s raining 😂

[dsa1980]

A very quick update after my Saturday rants and doom and gloom.

Had first chemo yesterday, went to plan, not too much waiting around and was out in 3.5 hours so not bad.

Best news is that despite the mess up on Saturday my oncologist is happy for me to still have treatment #2 on Saturday so the rest of my regime isn’t messed up.

Unfortunately this does mean I won’t have many days to recover and as I have to have injections for 3 days now to boost my immunity I don’t get a day with no needles now until next Wednesday 😢 and I don’t get to work out what days I’ll feel well / not because my cycles aren’t normal but for now I’m focusing on the positive.

Despite not being able to sleep last night because of the steroids I feel fine (if a bit tired) this morning so will carry on as normal until I notice otherwise!

I’ve got a very important birthday to plan (Alfie’s 2 on Tuesday) for and cake to start making the decorations for today. Pictures to follow.

[dsa1980]

View of Manchester. A lovely Fathers Day lunch at 20 Stories. (at 20 Stories MCR) https://www.instagram.com/p/Byxnt21nTiBJBYM5sKSB4hxqKsqUYg4xQhe7b00/?igshid=ym7s9tlt18y5

[dsa1980]

Treatment f**king cancelled.

Yes, I’ve been sent home.

They didn’t realize I needed blood taking before my chemo so they let us wait for 2.5 hrs before taking me up to the treatment ward to tell me.

I kicked off but (obvs) it made no difference.

I now need to come back on Monday.

We don’t know what that means for future treatment days and if it’s all now going to have to shift days. I’ve told them I can’t do Mondays because it’s Graeme’s day with Alfie and that means he can’t come with me / take me but unfortunately with the nhs being as stretched as it is I doubt that will make any difference.

We could not be more annoyed right now.

[dsa1980]

So for everyone who might be wondering “is she really always that positive or is it a ‘brave face’” this post is for you.

The last two weeks have been tough, and I am writing this sat in the treatment centre at the Christie waiting for my first chemo. They’re running late. This means I probably won’t get to give Alfie a hug before bedtime and that makes me more sad than anything else.

The last 2 weeks have included scans, pre-op appointment, last day working in the office and my port fitting and now my first treatment.

There was a lovely interlude yesterday when we went out for lunch to Liquor and Burn, Book of Mormon and stayed at the Principal in Manchester as it was Graeme’s birthday. I feel awful for him that it was sandwiched between my port fitting which was horrible, despite being sedated - which didn’t do anything - and today’s chemo.

I’m trying to focus on the positive with the port as the first picture shows the lump and bruise I have from my PET/CT scan where I had radioactive tracer in a cannula which took 3 attempts to get in. The cannula for my sedation on third was equally awful so this is why I’ve got a port. But I hate it.

I hate that I look like Frankenstein’s monster with a scar on one side and dressings that cover up another 2 scars and a lumpy port that will show under my skin on the other.

I hate that I have to have something implanted to give me a medicine that’s going to make me feel ill.

I hate that my son is not spending Saturday with his mummy and daddy having fun and cuddles (although he is having all of those things and is very happy, just not with us).

I know that this is just a psychological blip and after my port had healed and I’ve had a couple of my treatments so a better idea of side effects I will feel better about the whole thing and be back to pragmatic me, but at the moment I am in properly pissed off at the world this isn’t fair and I hate it mode.

(By my next blog post I’m hoping normal service will be resumed!)

[dsa1980]

The most painful, but most straight forward bit of today.

My head is a mish mash, although a tidy eyebrow mish mash!

I had decided for my updated blog I wanted to go all ‘Homes under the Hammer’ and find a cornily related song to the entry, but struggling to find one that can sum up the wierd thoughts and sensations I have had today.

Maybe that can be left for next time and you just have this lovely photo instead!

I’m sure you’re all dying to know:

Mircroblading was totally doable, the first ‘pass’ wasn’t comfortable, a mix between the sensation of waxing really long hairs, and a needle scratching your skin.  Not pleasant but as long as you keep chatting and trying to not think about it, is over relatively quickly, and to not have to draw my eyebrows on anymore is sooooo worth it.  On reflection this morning, it’s great not to have to put loads of makeup on, and the colour is great.  Thanks @aimeebaesthetics

(Very glad i didn’t cry like some of my friends reported!)

On to the ‘gritty stuff’ though, the stuff that you probably want to know, many people have asked me about but which unfortunately is very complicated and mixed up in my brain.

The ‘short’ version:

Chemo starts (probably) on 15th June - a Saturday!?!

I am having some more scans and a portocath fitted in advance, so LOTS more hospital visits.

I will have chemo every week for 12 weeks, a mix of Paclitaxol and Carboplatin (which is supposed to be THE treatment) for Triple Negative Breast Cancer (TNBC).  Apparently its unlikely i’ll be able to tolerate a full 12 weeks at full dose (although my onc obviously doesn’t realise that i now see that as a challenge!) and i might be allowed a week off at some point for a break away, which i hope to do to have something to look forwards to.

When you start to ask . . . and then what, it gets complicated, and uncertain.

If you can be bothered, here’s the ‘long’ version.  I have had to speak to Breast Cancer Care this morning to better understand this myself as its all quite confusing.

My cancer is (typical!) non-standard in that it can’t be clearly boxed ‘primary’ or ‘secondary’.

The fact that it is outside of the original site means that it is a regionally advanced, and not strictly primary anymore.  A few years ago this would be considered as metastatic, stage 4 incurable, but treatable,

Drugs, research and just numbers of people they study going through this, means that now, they tend to consider it treatable, however I am at a higher risk of it happening again.

The nurse described it more like a chronic illness than a one off disease, i.e. i might have recurrences again and they will be treatable again.  I am just hoping that 1) they scan me more often so we can identify the recurrences sooner and 2) someone hurries up and finds a drug that gets rid of it forever, so i don’t have this regular life-interrupting situation.

Partly due to this complication, the oncologist seemed unsure of what would be my best course of action and whether i should pay for some private molecular breakdowns of my tumour, some genetic testing using my saliva and chemotherapy profiling on the node in my neck if i could pay to get it taken out - but then he said that would be costly.  He seemed to talk himself out of most of this, so i left feeling like i’d been in a washing machine with everything spinning round in circles but ultimately coming out the same!

I need some more scans to get a more detailed view and check theres not some smaller tumours in nodes not picked up by CT, and to see whats ‘moving around’ before he starts chemo and, i think, to use as benchmarks to see if treatment is working.

I will need ‘something’ else after chemo but again, he doesn’t seem to have decided whether it should be surgery (if chemo works it might be hard to work out what nodes need removing) or radiotherapy, and also maybe an old chemo drug that they don’t use any more but which TNBC reacts well to apparently.

I think thats probably all the formal ‘news’.

I now need to work out what to do about my hair, get a voucher to get a new wig and my old one mended if possible, find out what other support is around and work out how on earth I plan life, work, fun around a weekly drug! (with a blood test appt a few days before).

Fun Fun Fun!!!

(Wierdly though - i still feel pretty normal and positive, waiting for a crash - i am sure it will happen at some point!)

[dsa1980]

Relief, I can’t describe how it feels

So today our little boy moved into his big boy bed.

He was very excited in theory but cried out for comfort when we left him in it.

I was able to fully engage with the whole thing. Be excited with him when we showed him the bed and his new bedding. Helping to read him a story whilst he was “under covers” and then worrying about how he’d get to sleep whilst he cried for Mummy and Daddy with his arms outstretched whilst we watched, desperate to go and hug him, over the monitor.

I could really ‘be’ there for all of this as my mind was free. Free from the worry of ‘what if’.

My breast care nurse called me with the news that my CT scan showed that whilst I do have cancer in the node in my neck, it’s not spread anywhere else.

I can’t begin to explain what that news feels like. I feel lighter, physically as well as mentally.

The relief that our little boy should still have a Mummy and that I should get to enjoy lots more time with him is indescribable. At the same time though, as the nurse kindly reminded me “but you still have to have treatment “ and by that she means chemotherapy and maybe something else.

My brain now has space to start processing that and whilst there is genuinely no worry about that, I am anxious about the fact I will need a port fitted (a semi-permanent access to my veins through probably my chest) as the veins in my right arm have been destroyed by previous chemo and my left arm has no lymph nodes so I can’t have needles in it as I could end up with lymphoma - swelling of the arm and hand that is irreversible.

Chemo, whatever drug it is is something I can cope with. I’ve done it before and I can do it again. Ideally I’ll have a drug that doesn’t mean I lose my hair, but as that’s unlikely I’m having my eyebrows microbladed this week.

I am genuinely more concerned about this than I am about chemo. I’m terrified it’ll hurt so much I have to say to stop and I’ll end up with permanently wonky brows!

Funny what life throws you and how you deal with it.

For me, I’m genuinely happy to have primary cancer (that’s because it could have been secondary and incurable) and I’m more scared of having my eyebrows done than I am about chemotherapy.

I bet very few of you reading this could say the same!

[dsa1980]

Had my CT Scan on Wednesday then a day at Legoland with Alfie on Thursday whilst NanGrandad on holiday.

Was lovely to spend a day just the two of us again, but it also made my brain go to places I don’t want to consider and I got quite upset watching the little person he’s growing into being busy and having fun.

It’s getting harder and i think it’s the wait. I’m bored of thinking, talking and worrying. The longer I wait the more I have time to consider the worst.

[dsa1980]

Chapter 3 - Day 1743 (you’ve not missed Chapter 2, its the one where i had a baby, just not written it yet)

Yep, it’s back. 

Or, possibly, as so far the information i have been given is vague, it might never have gone away.

Having found a swollen lump (lymph node) in my neck on 28th March, i this week found out that my cancer is back. I still have the one in my neck as before it was taken out i found another one that was in my chest.  This one has been removed and had a 25mm tumour in it which has the same pathology as my original cancer. Triple negative, grade 3 and Ki-67 of 42% (speed at which the cells are replicating) I am yet to find out (as the information was vague and as yet I have had no scans ?!?!) if it is spread from a new primary, or from the original cancer.

Regardless, it means I need to have treatment again.

If you don’t know me personally, you won’t know that since my original diagnosis and treatment, Graeme and I have been lucky enough to have a little boy, conceived naturally, not one of the frozen ginger kids who are still sleeping in St Mary’s Hospital.  

This makes the whole thing A LOT scarier as the stakes are higher.  I have an almost 2 year old who I do not intent on leaving, and who I want to see growing up.  On the other hand he provides an excellent distraction and reason to just keep going, not wasting time feeling sorry for myself.

So the hardest thing at the moment is not having all the information.  Not knowing where i am up to, what I can plan, what treatment I will be having, what that means in terms of side effects etc.

I have a CT Scan booked for Wednesday lunchtime, but I don’t have an appointment with my oncologist until 30th May (2 whole months since I found the lump which is still lurking there, causing unknown havoc).  I really respect the NHS and am so grateful for its existence, but I am NOT happy about how long it is taking to get a plan together.  What i hate more is that if i had private healthcare, this would have all taken approx half the time.  This two tier system is completely unfair, but i’m not going to get into politics or wasting my energy on negative stuff.

In the meantime I am carrying on as ‘normal’ trying to focus and keep working as well as being a mum and wife.  

Please keep your fingers and toes crossed for me that the CT scan only shows my lumpy neck up and nothing more scary.  

Will keep you updated.

Nelly

x

[dsa1980]

Day 421 – 27th September 2015 - The last blog (I hope its not just the end of the chapter)

Over the last few days I’ve been thinking that it might be the right time to write my last blog, as the original purpose of the blog was to keep everyone informed about how I was getting on, and now that I am out of treatment and back at work, if feels like there is little need to keep writing.  I had found it cathartic, sometimes it was a way of saying what I found it hard to verbalise, as I had time to write, delete, edit and think before I posted (something I am atrocious at doing in ‘real’ life – thinking before I speak!)

It also seems appropriate as my birthday nears, (ironically the first day of Breast Cancer Awareness month) that I bring this all to an end as I move forward to a life without the ‘C’ word.

Something I remember people on the YBCN forum mentioning, and not really being able to imagine, is the day when there are no thoughts relating to cancer.  Whether it be a worry about the future, a conscious acknowledgement of a persistent ache or pain, noticing a new symptom, having a side effect or generally thinking about what you are going through or have been through. Recently (and I hope this helps anyone reading who is still undergoing treatment, or just starting out) I have had a number of those days.  You only realise this afterwards (otherwise it wouldn’t hold true – to realise you’ve not thought about it, in itself is thinking about it!).  This happened before I went on holiday but more so when I was on holiday because there was so much going on that was more exciting or to think about.  

Punting in Cambridge the first time we went to visit Jon and Matt (Fred and Kristie were also expert punters) one of the days where I (probably) didn’t think about Cancer

Having said that, this doesn’t mean that I don’t still have some side or after effects, it just means that I don’t associate them daily with having had cancer.  (Also, having just written that sentence actually feels weird.  I can sometimes genuinely feel that it must have happened to someone else or in an alternative universe.  A friend I have met online said the same to me the other day, you can forget that you were ever ill.  I imagine it’s similar to when ladies who have given birth saying that whilst they know it was painful, their minds have a way of helping them to forget how painful!).

I am still not able to lift my left arm up properly, I get more tired than I used to and my cancer boob (bizarrely) often gets swollen and so is bigger than my non-cancer boob, despite having had a 2cm diameter tumour plus a reasonable size margin cut out.  This means it can be tender and on rollercoasters in Orlando I had to hold onto it as it hurt!  These are all the outstanding effects that I can think of, but they have become so normal to me that I often don’t think of them in relation to having been ill.  (I have also just thought of two more – my left boob tans more easily where I had radiotherapy so despite being topped up with Factor 50 I have a tanned boob in a square shape, and the other one is that a large section of my left upper arm and my left armpit is almost entirely numb which makes shaving it a very peculiar sensation.)

So this was supposed to be a picture of a rollercoaster to accompany the comment about sore boobs, but it seems that I didn’t take any of rollercoasters, so here’s one of us (Graeme, James, Sophie and I) when we’d just finished drinking all around the work in EPCOT instead!

I am now back at work full time (although with the amount of annual leave I have had left to take, I have rarely worked a full week) and am pretty much back to being the ‘old’ me.  This is good in some ways as all I wanted this time last year was for things to be back to ‘normal’, however it is also tricky to deal with in other ways.

There is a part of me that wants to forget about it, and be back to being ‘normal’, but also, I feel that by trying to embrace YOLO and living for the moment, ‘normal’ is too mundane and working 5 out of 7 days doesn’t leave much time for relaxing and doing exciting things, especially when there’s ‘life admin’ and trying to keep fit to squeeze in.

I get frustrated when we haven’t got anything planned that is fun, and I am finding it difficult to prioritise some of the boring things which I used to be quite good at doing before the ‘fun’ things (which meant I often didn’t get around to the fun things) like cleaning, making food from scratch, ironing, mowing the lawn / sorting out my vegetables – hence why my broccoli now has no leaves as the caterpillars had a field day.  

Its hard to explain exactly what I mean, but also (and from speaking to a few friends online about this) there is a feeling that whilst you want to feel normal, you also feel that there should be some kind of ‘payback’.  I really can’t describe this as when I write it down it sounds like I feel that I should be given special treatment which implies that I think other people should be treated less favourably than me (or my friends who have been through cancer too).  This isn’t what I mean, and the best example I can think of to describe what I do mean is that when we were in Orlando, for the last few days we were there, we stayed in the Hard Rock Hotel.  

Compared to the other hotels we’d been in (a perfectly good motel style hotel on International Drive and then a budget Disney hotel) it was amazing.  Really plush and one of the nicest hotels that I had ever been in.  We were only there for 3 days and that was more expensive than the previous 11 nights in the other hotels in total by a reasonable amount.  That in itself was fine, as we wanted to be in the Universal Park area and benefit from the VIP park access.  What I found frustrating was that there was a ‘VIP’ floor that we couldn’t access (i.e. an even more expensive section) and not only that, but there were families staying there that had been there for their 2 week holiday when we only had the two of us to pay for and we still couldn’t afford / justify this cost.  It’s just life, and I know that I am very lucky to have been able to be in Orlando in the first place, but there is a part of me that feels cheated that other people were able to be more ‘special’.  

This is where I sometimes feel that we should be able to use the ‘cancer card’ – a non-existent concept often ‘joked’ about on the forum e.g. ladies who have been wearing a headscarf or braved the bald look have sometimes been given freebies or special treatment and I suppose what I mean is that I feel that this should be a thing that exists and we should be able to use it to feel special as a treat for having to go through the treatment we have and for having to live with the fear.  Don’t get me wrong, this is completely unrealistic, and there are people far worse done to than me and my fellow cancer ‘survivors’(I HATE that term but not sure how else to describe us), in many ways, I know that I am very lucky, but its sometimes how I feel.

To end my blog, I thought it would be interesting for me to review what I’ve learnt from this experience so that I can refer back to it in the future and try and retain the positive.  Hopefully it might also help some readers to reflect on their own lives, and benefit from the insight I only got from having to face the reality that none of us live forever.  (Whilst this is the only truth for any of us, especially in Western culture, it’s something we are very good at ignoring).

There are cancer-related things, but mainly, general life lessons:

1. Life is short, and worse, can be taken away from you at any point so ENJOY IT.  There might not be a tomorrow so make sure that today is the best it can be.  Build your ‘bucket list’ into your general life plans don’t wait until you’re told how long you have left before starting to tick things off. 2. Make sure that the people around you enrich your life and make it better.  Don’t waste energy on friendships that are one way.  Having said that, we also have a responsibility to be the best friend we can be (if the relationship is worth having). 3. Be Kind.  Judge people on their intentions not their actions.  Most people don’t intent to be mean, inconsiderate, unfriendly or rude.  When these behaviours are displayed, we don’t know the whole story.   If someone cuts you up in the car, they might be driving hurriedly to the hospital to see a dying relative.  When someone is rude, or short with you, they might have just found out they’re going to lose their job, if someone is dawdling in front of you when you’re trying to get somewhere quickly, they might have just split up with their partner and be working out how to get through the rest of the day.  You get the picture.  If we pointed out this behaviour to these people they would often be really sorry, but they had their own stuff going on and they really don’t need us shouting at them making it worse. 4. Decide what your priorities are and give them the time they need.  Most people I know are very good at working late, on their days off and taking work home.  I have been in that trap before where this becomes the norm rather than the exception.  Compared to some of my friends who have been known to not get home from work until the early hours of the morning I haven’t done this, but I have taken work home every night as the norm, or worked late every night I didn’t have a prior engagement and rarely had a lunchbreak.  THIS IS NOT OK.  We all need downtime, but more than that, refer back to point 1 – Life is Short.   If you were to find out you only had 6 months left to live – would you spend some of it working?  If the answer is no, then you need to review your priorities now as none of us know when we might get this news (and I unfortunately known too many people who were given far less notice than this).  Its ok to work late when there’s a big project on, or if you’re one of the lucky ones who genuinely loves what you do (I love my job, but I love having my own free time more!) but otherwise, you should do what you’re paid for, i.e. your normal hours and spend the rest of your time with your family, friends or on your hobbies, whatever makes you happy. 5. Get any unusual symptoms (pains, lumps, etc.) checked out as it’s most likely to be nothing so it can stop you worrying.  If its not nothing, then I’m pretty sure there are no illnesses / diseases where survival rates improve the longer you’ve had them, so give yourself the best chance.

There are lots of other things I’ve found out about myself that probably won’t apply to anyone else as they’re quite specific (e.g. I REALLY like scrambled eggs, I enjoy IPA and sparkling water, and I love being in nature) but many of them I only discovered as I have been willing to try (or re-try) new things and due to mindfulness.  By being quiet and not being distracted by technology, a book or music I have been able to think things through without trying, and become calmer and less uptight than I was before.  I was very sceptical when I started doing it, and I don’t practice it much now as I find its hard to fit in with going to work but when I do spend a few minutes outside being quiet, I always feel better for it.

A final hair update:

I am getting used to short hair, and sometimes now it even looks ok (i’d go as far as saying I quite lie it on some days, however I would still give anything for it to be long again.

Here’s a collage from June 2014 (before I found the lump under my arm) to September 2015.

A snapshot of my ‘journey’ through the storytelling medium of hair (I didn’t want to scare you with  the non-makeup shots, but there are some pretty gruesome baldy ones - maybe thats an ‘extra’ blog for Halloween!)

For those reading this from the beginning, first of all, Thank You.  I hope that this is the ‘happy ending’ you would have wanted, and that over the past year and a bit, you have learned a bit more about me, and about what it’s like to be a young(ish) person going through cancer treatment. I hope that people who have just dipped in have found it useful and / or interesting and I wish with all my heart that this is the closest you ever need to come to finding out what a diagnosis of cancer is like.

If you’re one of the people who has found my blog because you’ve had to live a similar story, I hope I have told it as honestly as I could and that it has helped in some way.  If you’re just starting out, at least it should give you faith that ‘normal’ of a sort will come back and hopefully you will have a renewed sense of life with which to enjoy it.

Love to you all Nelly xxxx