Why Can't I Sleep After FEC?

Every time it's the same.  The first few evenings after FEC I'm falling asleep on the sofa by 9pm.  I go to bed and fall straight asleep...only to wake at 1am with the blood pounding in my ears, agitated and unable to lie still.  This lasts for a few nights, then seems to wear off and I can sleep again.

I had assumed that this was a side effect of the FEC that gradually wore off.  But it turns out that it is a side effect of the drugs that help you cope with the side effects...  Medrol is the culprit, taken to prevent nausea but creating insomnia.  It fits perfectly: I take Medrol for the first four days and then I stop and that is just when sleep returns.

This, I thought, was good news because I am now done with FEC and the next drug, Taxotere, is not supposed to induce nausea.  Then the oncologist told me that I would still have to take Medrol but this time to prevent allergic reactions.  It is, apparently, mandatory.

Oh well, at least I know what to expect now.  I'll be ready with my soothing music, glass of water and book by the side of the bed.  

I wonder if they will give me drugs to deal with the side effects of the drugs they gave me to deal with the side effects?

Nothing Like Chemo Day to Get Things in Perspective

This week my white blood cells were cooperating so I was able to go in for my third chemo session yesterday.

Although I was glad to be getting on with it, I had a heavy heart as I trooped up to the hospital floor I know all too well and got assigned my room.  After four weeks off I have been feeling really well the last few days and I wasn't looking forward to going through it all over again.

I have to say my hospital set up is very civilised though: while I've heard of people being hooked up in huge wards with lots of other people at the same time, we just share a double room with en-suite bathroom and our own TV that you can listen to with headphones.  In the other bed when I arrived, was a lovely lady with a sunny smile.

Turns out that she has ovarian cancer and her tumour is too large to operate or they risk spreading the cancer further.  So she is having chemo first to shrink the tumour before surgery.  Only it isn't responding.  So they keep having to try different regimes: she has now had 17 sessions of chemo and she still has a great big tumour on her ovary.

Sometimes people ask me how I can stay positive after a mastectomy and having to go through all these treatments.  But my tumour is gone and I only have 6 chemos to get through.  How can I be otherwise when this lady is still smiling?

Dos and Don't When Your Loved One has Breast Cancer

So, you've just found out that a friend or relative has breast cancer and you want to help but you have no idea what to say or do.  Don't worry, you are not alone.  It isn't easy.  But don't let that put you off: your loved one needs you now more than ever before.  We've been lucky to have been on the receiving end of fantastic support so far (and only a few clangers) so here are my dos and don'ts, based on what people got right...and what they got wrong.

1. First step, say something,  don't just pretend it isn't happening.   Yes, I'm afraid sometimes when people just don't know what to say, they drop out of touch altogether.  And yet a few carefully chosen words from you can make all the difference.  One of my friends is hopeless at emailing because she finds it difficult to express herself when she writes.  So she went on a quest to find a card with the 'right' words in it - three cards later she concluded, 'there is none.'  So she simply wrote: 'I've been thinking about you a lot.  I'm sending you good thoughts, positive vibes and a big hug.  Stay strong!  I'm here if you need a shoulder to cry on!  Good luck.  I know it is scary for you.'  How perfect is that?

2.  But don't say too much...and be prepared for a tongue lashing if you do.  Okay so it's important to say something but be aware that, especially in the early days, it's really easy to say the wrong thing.  Don't tell your loved one that you understand what they are going through.  You don't.  Even if you have experienced something similar, everyone reacts differently.  And DEFINITELY don't say you understand because you once had a bad mammogram result that turned out to be ok.  This isn't even in the same ballpark as getting a cancer diagnosis.  Do share your experiences if they are relevant but be wary about offering advice until your loved one is ready for it.  And if they get really mad because you said the wrong thing, just take the tongue lashing and tell them that you are sorry and you love them.  Honestly, they are not really angry with you.

3. Listen.  And then do some more listening.  Especially in the early days, your loved one might need talk it out over and over and again.  You don't have to fix things, just listen.  And then, with alarming suddenness, they might have had enough and desperate to talk about anything ELSE but the cancer.  So be prepared to chat about other things too.

3. Offer stories with caution.  It's nice to hear about so-and-so who had breast cancer and was just fine after a little lumpectomy and radiotherapy.  But it can get quite irritating when it's the tenth story you've heard along the same lines and your breast cancer has spread to your  lymph nodes and the MRI showed something that might be malignant on your liver.  There is breast cancer and there is breast cancer!  On the other hand, whatever you do, don't share stories about people who died from cancer (oh yes, it happens...).

4.  And the same thing for connections.  Your aunt's friend's neighbour once had breast cancer.  Wait, maybe it was skin cancer.   But it's got to be the same sort of thing, right?  You can put them in touch so they can help each other!  Oh please.   Have you any idea how many people I've been put in touch with who have nothing at all in common with me except they once had some brush with cancer?  Now, I'm not saying never do it.  Again, especially at the beginning, your loved one might have loads of questions and someone who has had genuinely similar experiences might be able to help.  Even better if they have something else in common; one of my connections was pure gold, linking me with another mum who had just finished identical treatment before she arrived in Brussels and had a daughter in the same class as my daughter.  Just make sure that it really is a good fit and will be welcomed by both sides - people who have been through it don't always want to relive it either.

4.  Offer to help.  Actually, people are very good at offering to help but it isn't easy for your loved one to say yes.  Of course you can ask what she needs, but she might have no idea what to ask for in the early days.  Make it easier by being specific: instead of a general offer ('Let me know what I can do to help'),  try and think what you would need in her shoes ('Can I pick the kids up from school for you on chemo day?' or 'Would you like company at the hospital?').   I found that meals delivered to us for the week after chemo were a huge help but I'd have been far too embarrassed to ask people to do that for me.  So a friend stepped in and organised a rota for me.  So, ask your loved one if they already have a rota.  If they do, join it.  If they don't, start one.

5. If you live too far away to deliver a meal, you can still send comfort.  Many of my dearest friends live far away and cannot help me in practical ways.  And yet they have still found ways to carry me through it through messages and things that arrive in the post.  They've sent me four leafed clovers, soothing music to listen to in hospital, a scarf to wear on my baldie head, a stone painted with the word 'courage', my favourite tea and lists of prayers that are being said on my behalf...

6. Stick with it.  We were overwhelmed by a tsunami of messages in the early days which was great, that was when we needed it most.  But cancer treatment is a long course.  It's not easy to keep holding someone's hand all the way through chemo and radiotherapy over a period of months, or maybe longer, and yet your loved one may need support more than ever near the end of treatment as she gets weaker.

7. Last but by no means least, don't forget the rest of the family.   I find that most people focus on me and sometimes ask how the kids are coping.   Only occasionally does anyone ask after my husband and then usually it's in conversation with me, not with him.  It is, perhaps, inevitable in the majority of cases like mine when the wife has breast cancer and the husband is the main carer - women tend to have much better support networks than men.  But the burden is heavy on them too so, if you can, ask him how he is coping too.

The amazing support we have received from friends and family has buoyed me up and enabled me to get this far with a smile still on my face.  It might not be easy to find the right thing to say but it's well worth the effort ...because you could make all the difference.  Good luck!

Those Pesky White Blood Cells

This week was due to be chemo week so I did a big shop, made sure there wasn't too much on at the weekend, organised a pick up from school for the kids, arranged for a friend to pick me up from hospital and got friends ready to do meals for the week.

 

Then I went to hospital to have my blood test and spent the morning hanging around to see the doctor...only to discover that my white blood cell count is too low.  So I have to wait and do it all again next week.

I must admit, I cried.  Actually I sobbed.  I think it is the realisation that I am totally out of control here: no matter how organised I am for each chemo, I simply cannot control how my body will react to the treatment.  That means I can't plan with any certainty.  My whole diary has shifted: a big night out now falls right after chemo instead of on a 'good' weekend, our half term holiday plans are in disarray, chemo has crept closer to Christmas and might even end up going on into the new year.

And it seems that this is a very common side effect, most people seem to find that they get delayed by a low blood count at some point in their chemo treatment.  There's not much you can do about it either (except take precautions to avoid things getting even worse with an infection while you are vulnerable).  If you Google, you can find suggestions of supplements that might help but with no real weight of science behind them, all you can really do is wait until your white blood cells recover by themselves.  Rest.

I hate that.

Of course there is also an injection that the docs can give you post chemo to help your white blood cells recover faster.  But I made the mistake of reading the cancer chats where people have reported the agony in the bones that can follow (always a mistake reading the chats, people never post when it didn't hurt).  So I'm now resting up, hoping that my pesky white blood cells will sort themselves out by themselves.

I'm learning that having Cancer means that I just have to be very flexible.  

I'm out of control... and clinging on for the ride.

Hooray, My Hair Fell Out!

When I first got the Cancer diagnosis, almost my first fear was that my hair would fall out.  Why is it that so many of us have a terror of the moment we lose our locks?  Is it a sense of being robbed of our identity?  A fear of having to publically declare our infirmity?  The reality that it might be last time we have lovely, long tresses as it will grow back slowly and possibly grey?

In any case, I never guessed that when the moment actually came, I would cheer with delight.

You see, I decided that it would be simply too distressing to wait until my hair came out in clumps so I opted to have it shaved in advance.  Despite what followed, I'd still say this is the best way to deal with a crappy reality: take control, choose your wig and decide the day you are going to start wearing it.

There was only one hitch: my hair refused to fall out.  My oncologist told me that it would start to fall around 14-15 days after my first chemo.  It would certainly be gone by the time I had the second round, he said.  So I went on day 10 and had the chop.

And it didn't fall.  Worse, it started to grow, so the bristles on my head became needles that stuck painfully into my scalp and caught on my wig and scarves.  What to do?  Should I let it grow, suffer the growing pains, only to have it fall out eventually anyway?  Or should I go and have it shaved again?  Was it possible that I would never lose my hair??

Then, twenty-seven days after my first chemo, I was in the shower and ran my hair over my bristly head...and it came back black with hair.  In one shower, almost the whole lot went down the plughole.  Suddenly my head felt smooth and comfortable again...and I was delighted.  

So now I'm properly bald and I feel vindicated in having had the shave (even if it was a little premature).  I can't imagine how awful that shower would have been if it had been great handfuls of wet hair blocking up the plug hole and sticking to the walls instead of mini-pins of hair.

Given my hair was so resilient, I'm now keeping my fingers crossed for my eyebrows.  A girl can live in hope, can't she?  But I might just get an eyebrow pencil ready anyway...