To drink or not to drink...

Last Thursday I had an appointment with my oncologist to decide on the next step.  We agreed chemotherapy would be the best option; well actually the only other option is to do nothing – not really an option. So I start on Monday.

The drugs that will be poisoning me are Irinotecan and fluorouracil, if that means anything to you at all. Probably not, why would it? But yeah they are poison so kill off the good cells as well as the bad resulting in some nasty side effects. Most are rare but the common ones are nausea, fatigue, hair loss, and lowered immunity.  This last one may well cause me some problems.  If you read my last post then you know I was in hospital with an infected abscess on the primary tumour and had an operation to drain it.  Now I was reliably informed that the only way to get rid of this infection for good was to remove the tumour but since that couldn’t happen there is a risk it will return.  Lowered immunity obviously increases this risk and my oncologist is concerned enough that he is giving me a lower dose the first session so it’s not such a huge attack on my system and has prescribed antibiotics for the first month when the chances of low immunity are highest.

The necessary evil

So upon hearing this, good patient that I am, I went home and googled ‘how to increase immunity’ and basically the top tips are…

“Number one: eat a balanced diet with lots of fruit and vegetables (yup already do that one); number 2: drink lots of water (hmm mostly do this one already as well) and number three: Get lots of sleep (ha! This one isn’t going to happen, not in my house!)”,

And then it hit me, a distant piece of knowledge from the recesses of my morphine addled mind.  I got straight on the phone to text my good friend Ellie, ‘I’m going to need a pint or two of Cleo’s favourite tipple’. Ellie replied, more than happy to oblige my request; Cleo is 5 months old and her favourite tipple is currently available on tap and free anyway. Well it might cost me some cake (to fuel mama).

Beautiful Cleo who's lovingly shared her milk with me

My milkshake brings all the boys to the yard...

I’m sure that the more conservative of you may be shocked by the suggestion to drink human breast milk but I don’t find it strange at all, in fact it’s a lot less strange than drinking cow udder milk, and it potentially has benefits to adults as well as babies. Babies are born with little immunity so breast milk is high in immunoglobulins which fight infection.  Most mother's I know will have squirted breastmilk into a child's eye infected with conjuctivitis at some point due to it's magical antibacterial properties! Ancient Egyptians added it to honey and used it as a medicine and ointment. And whilst this may not be beneficial to the average adult, it makes sense that it could increase the immunity of someone who's immunosuppressed.

The other huge plus for cancer patients, which I discovered upon googling, 'breast milk and immunity', is that there is some research suggesting that a component from breastmilk, HAMLET (Human Alpha-lactalbumin Made LEthal to Tumor cells) induces cell death in cancer cells, whilst leaving normal cells unaffected. HAMLET is a protein-lipid complex formed when the protein alpha-lactalbumin from human breast milk changes structure by binding to oleic acid (the majority of fatty acid in breast milk) in vitro. Experimenting on mice, scientists have shown HAMLET to reduce the tumours of 40 cancers, including bowel cancer, and are now carrying out clinical trials in both bowel cancer and bladder cancer patients.  Now, I have trawled the internet looking for information telling me that alpha-lactalbumin in its cancer-busting form is found naturally occurring in breast milk and therefore readily available by drinking it, but unfortunately I couldn’t find any.  The human body is an amazing thing though, and it wouldn’t surprise me if it had the ability to provide the perfect conditions whereby the reaction to form the  HAMLET complex takes place if it was required.

Anyway, even if drinking the stuff doesn’t kill cancer cells it may well provide me with a useful top up of infection-fighting bad boys! So if it keeps me out of hospital and still able to have chemo, I’m more than happy to drink a few glasses a day… and it really doesn’t taste that bad, especially in milkshake!

Chemo-ready

The last month or so has been a bit of a rollercoaster ride (and I’m not keen on rollercoasters) to say the least.  Following my scans at the end of August I was told I wouldn’t be having an operation to remove the tumour as the metastases on my lungs had changed so palliative chemotherapy was the most sensible next step to take.  This was a huge blow as you can imagine, secondary tumours are a lot trickier to deal with apparently, although I’m still not that clear as to why. Still I was determined to fight and get going with chemo as soon as possible. A few days later however, I was blue-lighted to A&E with suspected sepsis.  This changed everything as chemotherapy can’t be given if there is infection and the only way to get rid of the infection (caused by an abscess on the tumour) is to remove the tumour – and suddenly the operation was back on the cards!  When previously all I wanted was to get the damn thing out of me, now I was panicking about my lungs and wanting to get on with chemotherapy and the operation would delay this by 6-8 weeks.

That tumour will be removed one day

The hospital stay ended up being a gruelling two and a half weeks whilst they got the infection under control and got me ready for surgery.  Prior to going under, the surgeon explained the procedure to me.  They planned to remove the tumour and abscess and whilst there give me a colonoscopy and reverse my ileostomy.  Fine, ok, all good, I headed into theatre and the next thing I know is I’m in the recovery suite in absolute agony.  After a few moments of coming round I realised I still had the ileostomy and my heart sank.  I figured something had gone wrong; turns out after all that, all they could do was drain the abscess as removing the tumour would be too risky because it’s still too close to my pelvic bone. So it’s STILL bloody there and chemotherapy has been delayed by 3 weeks faffing time, plus another 3 or 4 weeks whilst I recover from the operation. I seriously feel like nothing can ever just go to plan. I'm totally determined it will be removed one day!

Some positives from my hospital stay: 1. People bring you rainbow cake and more chocolate than you could ever eat, 2. People teach you how to make old school friendship bracelets to while away the time, 3. Nope, I can’t think of a third.

Big hugs & bracelets

Anyway, moving on from that fiasco, last week I had a portacath (I know, I had to google too) inserted which is one step closer to being chemo-ready.  This was simultaneously one of the coolest and one of the most uncomfortable things to ever happen to me.  A portacath is a line to administer drugs directly into a vein, reducing the need for catheters which over time cause weakening of the veins, and my veins seem to refuse to have them in anyway. It’s a small plastic disc that sits completely under the skin in the chest, with a plastic tube that travels up and into to the vein, which joins the vena cava and down into the heart. That’s really cool, right?  Max reckons I’m some kind of robot now… I prefer bionic woman but robot will do I suppose.  Either way, this and the fact I took him to the Lego Ninjago Movie, means in his eyes I’m so much cooler now than I was a few days ago! Getting it there was not so cool.  It was inserted under local anaesthetic using x-ray to guide the radiographer.  I didn’t feel any pain but wow was it uncomfortable and weird.  It’s so so strange to have someone prodding and poking at your chest in such a forceful way it knocks the wind out of you. Then I could actually feel the tube travelling around inside my chest.  I was really panicky and shaky throughout (a nurse had to press down on my leg for the whole hour as it was shaking so much) but I did manage to take a sneaky pic of the X-ray afterwards though! I now have a scar on my chest and a small bump under the skin. Once the wound heals though, there shouldn't be much to see and because the port is completely covered (protected) by the skin, it's safe from being pulled at by little hands.

Bionic woman!

Scars are cool (Photo: Becky Williams,

www.beckywilliamsnewborns.co.uk)

Scanxiety; Sun, Sea, Sand; and a Swim

I haven’t posted here in a while.  I have been recovering from the ileostomy op I had 8 weeks ago (I will allow the delights of being an ostomy newbie a post all to themselves), and getting on with radiotherapy, which was completed on the 30^th of June.

End of Treatment Bell

So radiotherapy is over.  I rang that bell and the first milestone on the road to recovery has been reached.  Congratulations! Yay! Go me! It felt great for a few days but then the side effects (severe abdominal cramps and nausea, which, when they hit, send me to bed with a hot water bottle and a bottle of liquid morphine) and the scanxiety kicked in. “Scanxiety?” I hear you ask… Yes it is a real word apparently, at least in the world of cancer patients and survivors, and presumably any patient whose treatment involves scans and the potential for less than good news.  Scanxiety is, as you would expect, the sense of uneasiness whilst waiting for the results from scans.  I have to wait 6-8 weeks, whilst the radiotherapy is still working its magic, before having scans that will show us if it has worked to shrink the tumour.  I say ‘if’ because there is always the possibility it hasn’t worked.  There is also the possibility that it has spread elsewhere in the meantime, or that the nodules on my lungs that were ‘indeterminate’ have grown and are now very much ‘determinate’.  I’m usually a pretty positive person, but I have to say I have been a little on edge trying not to imagine the worst. 

 

Sun, sea & eating sand

Anyway as a result I have been a bit lethargic and uninspired; but last Saturday I returned home from an unusually sunny family holiday, feeling refreshed and energised by sea swimming, sandcastle building and wildlife spotting! So energised in fact, I have signed up to do the Great Scottish Swim on August the 26^th.  In a moment of madness, I rationalised that training will keep me occupied and motivated in the coming weeks thus minimising said scanxiety, with the added bonus of raising money for a worthy cause! That’s the idea anyway; it could all go horribly wrong resulting in my having to be rescued, half-drowned from the middle of a freezing loch.  I used to be a fairly big swimmer, visiting the pool weekly plus donning a wetsuit for a wild swim at every opportunity, and have done the Great Swim in Windermere in the past.  However I haven’t been swimming, not counting taking the children for a splash about, for well over a year now; plus I can’t get through the day without morphine, so I think swimming half a mile presents a fairly decent challenge.  I had probably better get some training in!

Just one of the many...

I am going to be fundraising for Bowel Cancer UK.  A pretty obvious choice, I’m sure you’ll agree.  They do an amazing job supporting research into bowel cancer as well as campaigning for early diagnosis.  Their Never Too Young campaign, which aims to improve clinical practice and policy in the diagnosis and treatment of younger sufferers, particularly resonates with me due to the issues I had getting a diagnosis. I really hate asking people for money (so don’t make me!) but if you did fancy supporting me please check out my Just Giving page and donate (if you like) or share it with your friends and family (if you like). Either way thank you very very much!!

Great Scottish Swim - Loch Lomond

Milk

I’ve just finished week two of daily chemo-radiotherapy and we are getting into the swing of things. I'm not feeling as bad as I thought I might, just a bit queasy really.  And tired, although no more so than I was already.  However, the daily trips to the hospital are becoming tedious!

I wanted to write a bit about how this is impacting my boys but now i've started I realise they each need their own post as at such different ages, it is affecting them very differently.  Whilst Max, at 6 has an appropriate understanding of everything that’s going on and the anxieties that come with it (more on this later); Finn (10 months) obviously has zero understanding of the situation, and having had me mostly to himself, is now dealing with my sudden absence for several hours each day.  This has perhaps increased his separation anxiety, which naturally presents at around his age, and he is often distressed when I wave goodbye. Despite hearing he is easily distracted with walking practise, I hate leaving him and this was really not how I wanted to spend the last few months of my maternity leave.  

Photo by Becky Williams

 (www.beckywilliamsnewborns.co.uk)

Another major adjustment is that Finn has had to adjust very quickly to life without breast milk.  This has been the hardest part of my journey so far, certainly harder than hearing the diagnosis. He, on the other hand, after just two weeks, is coping amazingly well.

I’m not planning on having any more children (and now won’t have the option after the daily frying my eggs are getting) and, as many mothers will attest to I’m sure, I wanted to keep my last a baby for as long as possible.  Breastfeeding has also been a huge part of the bonding process for me.  Due to horrific pregnancies and births (think Sigourney Weaver nurturing and birthing an alien bug baby), I found it very difficult to bond to either child whilst they were draining the life out of me and only fell in love with them after they were out and I was back to normal.

So, I had every intention of allowing Finn to self-wean, whenever that might have been, and was heartbroken when I was told at that first meeting, ‘hey, not only do you have cancer and we don’t know what the prognosis is, but obviously whatever the treatment is, it will be intense so it’s important you stop breastfeeding straight away’. I couldn’t help but fear that the happy, calm, perpetually smiley baby who was so secure, in part at least due to our strong attachment, might change and that our bond might be affected by the sudden removal of his primary source of comfort.  I really needn’t have worried. The previous 10 months have obviously stood him in good stead and he took it all in his stride, transitioning relatively painlessly onto a combination of formula and, thanks to some amazing friends, donated breastmilk.

I am still expressing daily (In fact typing this one-handed whilst pumping; multitasking!), which although it is a time-consuming and sometimes arduous task, means I will have the option of continuing to feed him when treatment ends.  He might choose not to and that’s fine, but I would like us to have the option.  I certainly wasn’t ready for our breastfeeding journey to end so abruptly.

As a side note, there is a lesson here about not listening to one consultant’s advice but seeking further professional opinions.  Of course there were several options available to me, depending on the course of treatment, and it was not as clear-cut a decision as they made out in that first meeting.  Anyone who finds themselves in a similar position, I would urge you to explore all the available options, and I found La Leche League (www.laleche.org.uk) and the Breastfeeding Network (www.breastfeedingnetwork.org.uk) great sources of information and advice.

Anyway, every cloud has a silver lining and all that… as a result of Finn being cow’s milk protein intolerant I gave up dairy 8 months ago but since I am now free to eat what I want (at least for a few weeks), I’m off to eat all the cheese followed by a massive bar of Dairymilk!

I would also like to say a huge thank you to Becky Williams (www.beckywilliamsnewborns.co.uk) for capturing breastfeeding images on the beach before the treatment started and we had to stop.