Save the date

I got the date for surgery. So the big cut is coming on the 20th July. This is a couple of weeks later than I was expecting. The surgeon did say it would be the week of the 6th July and my pre-op appointments are that week but then there’s a two week gap before the actual surgery. I’m not sure why the gap. It could be because the surgeon wants to give me more time to regroup before giving my body another big hit. Or there are just too many bad boobs in East Sussex to slice and dice. I’m undecided about how to feel about this. On the one hand it’ll be nice to have some extra time to feel good. But this period has taken on a limbo-like air and part of me wants to just get on with it.

It was a big cancer day today as well because I also had my first Herceptin injection at home. Herceptin is this amazing drug that targets the cancer cells directly rather than chemo drugs that carpet bomb anything that moves. It can do this because my particular cancer (remember there are 14 different types) has this receptor for a protein called HER2. I realise I may have lost most of you half-way through that sentence. So let’s break it down. Cells have these jigsaw piece-like holes (receptors) on the outside of them that can hook things they need to grow and replicate. The things they need (sugars for energy, proteins to grow etc) have the jigsaw-like shape to fit the holes on the cells. My cancer has lots of holes for a protein called HER2 which it needs to grow. So the Herceptin drug is shaped like the HER2 protein and fits snugly into the holes on the cancer cells. So when the real HER2 protein floats by it doesn’t have anywhere to slot into and therefore doesn’t feed the cell what it needs to grow. Clever wee drug.

I’ll have these visits from the home nurse for the next year, every three weeks. It takes about 2 minutes for them to inject me as it has to go in slowly. It stings a bit for the first 30 seconds or so but inane questions from hubby about train times and The Little Mermaid film kept me distracted from the discomfort. The slightly strange part of it is that it wasn’t the district nurse who administered the injection but a nurse from a private company called Healthcare at Home.

healthcare at home

I have a visceral negative reaction to private healthcare and I think it’s mostly because it feels like a slow creep that will eventually overwhelm the NHS. I realise though after asking a few questions that it is more complicated than my knee-jerk reaction and I’d have to do months of research before I could do justice to such a complex subject. I was treated in a private hospital for my chemo as well and of course it was lovely. It was amazing to have the same nurse every time and build a trusting and warm relationship with her. The chemo unit was designed by cancer patients and they made a stressful experience as nice as it could be. There were some fairly clear downsides to it as well without the hardcore research. The head nurse at the unit told me that they charge a day rate to the NHS and so often end up taking on patients that are on the cheaper chemo drugs in order to increase their profit margin. I’m not sure if this means anything. I would guess though that the more complex medical cancer cases might end up staying in the NHS system and the private sector cherry pick the straight forward patients. Again I would have to do a lot more research on whether this is actually happening.

A small incident just happened with the Healthcare at Home nurse where Adam asked him if he could take away our Sharpsguard box. It’s a locked plastic box where I can put my old needles. He wasn’t able to take it because they have to pay for every box they dispose of and because the box had writing on it identifying it as an NHS-given box, he couldn’t sneak it past his corporate overlords. A minor thing but interesting in terms of the competing needs of the patient and profit. In all encounters with private versus public healthcare, the staff have always been caring and competent. Except for the people who take my bloods. The NHS always rush me through and I get more bruises because they haven’t taken the extra 10 seconds to press the flesh.

The whole visit took two hours and now I await possible side effects. They were invisible in the whole chemo hellishness so let’s see what happens.

Button it

I’m sitting in a cafe feeling desperate. My mission to find post-surgery clothing is failing miserably. I need a button up top, maybe two if I feel risqué. This will enable any medical type who wants easy access to my boob. Also I won’t have to lift my arms to get dressed. Something I’ve been told I will appreciate immensely at the time. Except I can’t find any, not a one. So I’ve taken refuge in the coolest cafe ever and eaten as many vegetables I could find.

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OK so I’m feeling renewed and off I go to Marks and Spencer’s. Perhaps trying to be funky for surgery was too big an ask. Time to suck up the uncoolness of cancer.

Boob is saved.. so far

Yes, it is good news folks. And didn’t we need some of that. It seems all that pain, nausea and hell of chemotherapy paid off. The tumour is down to 3 cm, halved in size. My surgeon, the relaxed and immensely reassuring Mr Zammit, said he couldn’t even tell the difference between it and normal glands. He gave me three options for surgery without even a sniff of the M-word. I could have a procedure that meant taking a good chunk of breast tissue, meaning that there would be quite a change in size and shape. That also meant another operation next year to reduce the healthy boob to match. The next was to go in from the top and just take the tumour (plus a margin), meaning leaving a big scar on my cleavage. The last to tunnel in from around the nipple and remove the tumour leaving no scar at all. I was slightly tempted to get a free boob reduction on the NHS with option 1 but big NOPE to the more operations and bigger scarring. So I plumped for number 3. I’m actually pretty blown away that I could come out of all this, not only with my boob intact, but pretty much the same as when this started.

cushion

This is my boob pillow for after the operation. I thought it was rather a sweet touch to make it heart-shaped. The surgery is going to happen the week of the 6th July to give me some extra time to recover from my “rough time” (their words) in chemo. I’ll have all my lymph nodes removed too now that they did their job but are not to be trusted anymore. Seems like a poor reward for the wee glandy thingies. A drain will be fitted below my armpit to collect fluid from the wound in a tiny bag that they give me a handbag to carry around in. I’ve never had a handbag in my life so this will be an image change. One interesting part of this process is that I’ve realised I don’t fit the medical profession’s idea of what a woman should be concerned about. I fear I haven’t been consuming their make up sessions and free perfume with the appropriate level of feminine enthusiasm ; p

I’ll be in hospital for 2 or 3 nights depending on how I regroup from the surgery. Hopefully I can go home lickety-split but the drain may be in for a week and it could take a month to recover fully from the op. After that it will take 2/3 weeks for them to analyse the tumour and the margins to check there’s no pre-cancerous or loose cancer cells around. If there is, I’ll go in for a day operation to scrape away the tricky areas. If those are clear or it’s clear in the first place, then it’s onto the next phase of radiotherapy. But that’s for later.

For now, let’s celebrate and enjoy the awesomeness of boob save-age and shrunk lump.

 

 

 

Goodbye Red Week

The last red week is over. I won’t lie, it was the worst one yet. In fact, it was more like red ten days and I only really felt myself again yesterday. During the first four days I was overwhelmed by an all senses enducing nausea. People talking to me, me talking to people, sunlight daring to shine, street noise, being touched, it all made me want to vomit. My neighbour hearing me describe it this way said it sounded akin to when he gets a severe migraine. I’ve never had one of those but maybe if you have, you get the picture. I basically just have to hole up in Lilah’s bedroom and wait for it all to stop. After it lifted, it was just plain old nausea. I made the mistake after a week, you know with it being called red ‘week’, of attempting to leave the house. We went to the allotment and after walking up the 20 metre hill (with several pauses for breath) to the plot, I up-chucked in the flowerbed. But vomit is a fertiliser right?

Smack bang in the middle of red week I had to start injecting myself with GCSF to boost my non-existent immune system. In previous cycles, the side effects have been manageable with ibuprofen and old lady shuffling movements around the house. I get chills, not John Tavolta grease lightning style ones. Fevery, shivery chills that make me shake uncontrollably but without the accompanying normal high body temperature. I have to watch this carefully because it can make me miss a real fever. Then I get a dull ache in my bones in the pelvis and lower back that if I move too fast can turn into agonising jolts. They are centred in this region of my body because that’s where my bone marrow makes all the weeny white blood cells that make up my immune system. When the GCSF starts doing its thing, my bone marrow expands and among other things I don’t really understand to do with neurons called noiceptors, sends panicky messages to my brain.

This time, the pain wasn’t manageable. On the worst night, as I made the unreasonable attempt to turn over in bed, it felt like my skeleton sank slowly to one side of my body and ended up in a pile at the hip slicing its way through my flesh on the journey. My leg muscles were feeling left out of the pain party, so they joined in. Then the chills started and every time I shook, a wave of pain would ripple out from my pelvis up my spine and down my legs. It reduced me to a blubbery mess. Luckily I have the best husband ever and he rushed in to soothe me with massage oil, loving whispers and some serious spooning until I finally fell asleep.

That’s all done now. I will never have to feel that way again. There is more discomfort to come I’m sure and probably more pain. But THAT particular pain. That’s done. I made it to the allotment three days after that, climbed that 20 metre hill without pause and didn’t vomit in the flowerbed. A win.

wpid-wp-1434347685391.jpegNow that I’m finished with that part of the cycle, my head is clearer and I’ve been contemplating the next phase. I have my appointment with my surgeon in two days to decide what kind of surgery I’ll be having, a lumpectomy or a mastectomy. This will all depend on where the lump is and the size. If it’s too big still and in an awkward place, then I’ll probably have to get the whole boob removed. This is where having enormous boobies will come in handy for once as there’s more breast tissue to work with. But it’s all still very uncertain and depends on the results of the last MRI and a clinical examination on the day. I have been attempting to meditate on both possibilities for a few days now. Not literally meditate because I am unskilled in that regard. Just thinking on it. Trying to accept both and failing. I realise yesterday that it’s impossible to accept things when you don’t know for sure what they are. So I decided to accept the uncertainty instead. I’ll accept what comes, when it comes.

This is where I’m at now. I’m looking forward to a whole day without pain, free of nausea. A day to spend with my family, enjoying the normal movement of my body, speaking, eating, being. Today will be a good day.

Guest Blog: Kat and Karen on a whip round

*** First a quick message from me (Heidi): Just to let you know that I’ve emerged from nausea hell, and I’m doing OK. Lots of love.

A message to Bosom Buddies from Karen and Kat:

Heidi in hospital

Hello Bosom Buddies,

Would you like to find a good way to help support Heidi’s recovery from breast cancer? As you know, she’s just had her final chemo treatment and she’ll get test results next week which will decide the extent of her surgery. Now she has to face surgery, radiotherapy, 5-10 years of hormone therapy and a considerable amount of recovery time. So she needs our support more than ever.

One way we can help is to make a gift of some money towards her care over the next few months including: organic fruit and veg, nutritional supplements, specialist oncology massages, and travel to and from hospital. We can also help fund a lovely treat for them to look forward to when they’ve come through this. It’s so important for them to be able to visualise a time when they’ll all have fun as a family again without all the stresses of recent months.

We’ve set up a GoFundMe page to make it easy for us all to contribute in a very straightforward practical way. If you have any questions, please post them in the comments.

It would be fantastic if we can rally round as their friends and family and help them out. Let’s show what Bosom Buddies can do!

Lots of love, Karen and Kat

LAST chemo is surging through my veins

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I didn’t feel the need for a poster proclaiming the end of chemo. Me and my chemo buddies, Becky and Mum decided fist pumping was more on form. Except mine looks a bit scary. I blame the bald head. But perhaps  maybe it did take a bit of feistiness to get to this point. So this is the moment after the last drips of carpet bombing drugs went into my veins. A vein that finally came out to play in a timely fashion. Isn’t it just about right that on the last cycle, things finally went according to plan.

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Then the rest of my buds arrived so extra smiles ensued. Lilah has mixed feelings about the end of chemo. She’s delighted Mummy is getting better but is gutted about missing the free computer games and rolling  dangerously around the corridors on the wheeled footstools. There are things I will miss too. The concrete support from the staff who were always just at the other end of a phone. The incredible and consistent care tjey took of both my body and soul.. and the free vegan lunch ; )

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Before I left I gave those wonderful nurses the cucpakes I baked them and then blackmailed them into giving me a congratulatory sticker. At short notice a small purple dot I suspect they use for the staff schedule was all they could come up with. Even so I cherish that wee sticky circle. I earned it ; p

Guest Blog: Kat on being a carer

Hi peeps. Sorry for radio silence but I’ve been taking a wee break. I’m just gearing up for The Last Chemo tomorrow, baking cupcakes for the nurses and getting my head prepared for feeling crap for the next week. I’m counting the ‘Lasts’ of every step, so today was the last preparatory blood test to check my cells are recovered enough to carpet bomb for the ‘Last’ time. Anyway I have been remiss in not posting this lovely bit of writing that Kat did earlier on being a carer. Here it is now just in time for the ‘Last’ chemo..

The first rule of Carers’ Club

As I was with Heidi during her second round of chemotherapy, she asked me to write something about being a carer. Guest posting on a blog where Heidi has been so eloquent, insightful, and informative about what she is going through, at first all I could come up with was this:

  1. The first rule of Carers’ Club is do not infect Heidi.
  2. The second rule of Carers’ Club is Do Not Infect Heidi.
  3. The third rule of Carers’ Club is DO NOT INFECT HEIDI.

While this is indeed essential advice(!) however, a lot of the issues that came up were not practical as much as emotional. So here’s what I learned from Carers’ Club, many of them I can tell you about only because I often get them wrong myself.

We’ll almost certainly say the wrong thing at some point.

I know I did. But that worry shouldn’t stop us from trying. We can always let ourselves be given feedback. Friends can withdraw from cancer sufferers because of that fear of saying the wrong thing. The worst thing of all, however, is to stop communicating due to that fear.

And in any case, probably the most important thing is not what we say but how we listen. Which is always far harder than it seems, considering all we really need to do it is a pair of ears and a beating heart.

The Ring Theory of Kvetching

Related to point one: there’s something called the Ring theory of Kvetching (ie complaining / emotional venting). I’m sure you’re all too lovely to need to be told this, but it’s a useful concept and as the author points out, at some point in our lives we’ll all get to be the one at the centre of the Circle! The article is worth reading in its entirety but the brief version is: the ill person is the one inside the Circle of Kvetching and she can kvetch all she wants. Then outside this are layers of concentric rings, going from people closest to the issue or trauma, to those farthest away, eg the 2nd layer is the partner and child/ren, the 3rd close relatives, the 4th is friends, and so forth. So the basic rule is this: you can only kvetch to people in a circle layer outside your own, never inwards. Comfort in, dump out.

The Importance of Kvetching / or Take care of yourself.

That said, seeing our friend going through something like this is upsetting and we need to know it’s ok to feel our Feelings, and share them too, as long as we are not dumping ‘in’ (see above).

The occasional rest is also ok. Caregivers can neglect their own needs, which is understandable in an urgent situation but over the long term is not sustainable. A burnt out carer is not a very helpful carer – especially if in wanting to help out we promise more than we can really deliver and then have to disappear from the situation abruptly when someone is counting on us.

Also Heidi being super smart with an emotionally intelligent spider-sense will spot self-neglect straight away and worry. And we don’t want to give her anything extra to worry about, do we?!

Being present

Simply to say that being there and seeing the situation in the flesh was far more easy to deal with than imagining it from afar.

Also, I really believe there is a grace and real strength in being able to ask for help that grows a person rather than, as many think, diminishing them. Heidi seems have known that instinctively when she got ill. And in the same vein there is feeling of connectedness and interdependence in giving it. It may sound odd to say but it was a really meaningful time.

Often when I felt helpless I wanted to problem solve.

Finding that fine balance between wanting to help, without going into problem solving mode in an overbearing way, is a tricky one (especially for me!)

That incredible cure for cancer going round on facebook probably isn’t.

Related to the above, if you have heard of an incredible new cure for cancer, please check the sources, and look for scientific evidence. It can be tiring to be bombarded with this stuff. Adam and Heidi are pretty rigorous and have already done extensive research; having said that there are things they’ve asked for help with researching, it’s worth checking in on this.

The incredible relief of being able to empty Heidi’s bin.

This relates to how we all want to help and what a relief it when you are able to do some tiny little practical thing. I know it isn’t about me (see Ring Theory of Kvetching) but helping in a practical way made me feel so, so much better, however tiny in the scheme of things.

I can’t cure cancer, but by God I can empty the hell out of Heidi’s bin. 😉

Finally, there probably are some key practical things it is good to know, in the vein of ‘Do Not Infect Heidi’. Heidi’s mum typed up a list of tips for carers, if you’re coming to stay you could ask for it. Here though are some key points:

  1. Unfortunately, if you have a virus or been in close contact with someone who does, please don’t visit or send food, as Heidi’s immune system is seriously compromised during her chemotherapy cycles.
  2. Other than that above situation, I believe vegan food would be rather welcome? Probably if your visiting generally think about offering practical help. Use antibacterial and antiviral hand gel when visiting.
  3. Keep the house – surfaces and floors – disinfected.
  4. Double check on the drugs – the nurses give you a printed out table – as it’s best to be safe even if you feel like a bossy boots.
  5. The best things you can do are the most practical eg washing up, cleaning the bathroom, cooking something from the Cancer cookbook, playing a game with Lilah, picking up stuff from the pharmacy, doing the laundry. I have never been so happy to do household chores! Mopping is love in action.