Sunday, 14 November 2010

Changing tactics

Since the last blog update, things have moved on. Not in a particularly bad or good way - just a change.

Mam had her first check up with her consultant since she stopped chemo, three or four months ago. Most of the time she's been fine, but there have been days when she's been sick, not eating much and generally not with it. The cystitis which marked the start of this whole thing has been on and off so she's been backwards and forwards to the doctor, trying different medication, with varying degrees of success. She had the stents changed that lead to her kidneys, and my sister is pretty convinced that simply having the stents there can cause cystitis.

These days I can pretty much tell when I phone mam, right from when she says "hello", approximately how she is - when she's having a rough time of it she sounds very fragile and quiet.

So hubs and I made the long trip up north for a long weekend in mid October, so we could go with her to see the consultant. Mainly because if it was bad news we didn't want her to be on her own when she got it, and also because she's said she prefers having someone with her to think of questions for the consultant that otherwise slip her mind.

Last time I went with her we had a near three hour wait; I know the NHS is pushed for resources but that's ridiculous. This time, we'd literally only just sat down in the waiting room and she was called! Mam's consultant, Mr Hughes, is lovely. Very friendly and approachable - whoever it was we saw last time had the manner of someone who just wanted to get the facts as he knew them, over - and onto his next appointment. Mr Hughes made it seem like mam was an old friend, someone he was genuinely concerned about, whose worries and questions he cared about. And he looked like Phil Spencer from 'Location Location Location's younger, slightly better looking brother ;-o

Basically the tiny hotspots of cancer that were left after the chemo HAVE begun to grow again, but in Mr Hughes' words, "nothing horrendous". And you could tell by his attitude that he wasn't terribly concerned. The options are either tamoxifen, which is a hormone treatment normally used to treat breast cancer - or a different kind of chemo from last time. She can stay on tamoxifen for up to five years, there are minimal side effects, it can have the effect of stopping the cancer in its tracks and sometimes it can actually shrink it. Or she could have the monthly chemo again but she'd feel slightly ill after each session (although not as bad as last time). After discussing it between the three of us, the decision was to try the tamoxifen and keep the chemo as a backup - and mam was given her first supply even before we left the hospital. She'll have a checkup with Mr Hughes every three months, then three months later a CT scan and review, and so on.

Here's to progress.

Friday, 3 September 2010

A new kind of normality

Thought it was about time I updated the blog as it's been a good long while since my last post.

To summarise: mam had her final two sessions of chemo, but the usual three week gap between each of those two turned out to be 4 or 5 weeks because she'd been suffering from cystitis - which, ironically, is apparently a side-effect of the chemo! The consultant didn't want her to have the chemo while she was taking antibiotics and not feeling 100%.

So she eventually had the last sessions, and was asked back a fortnight afterwards to have a scan, to compare with the one that was done at the beginning of the chemo. The outcome is bad in as much as the last two chemo sessions weren't particularly effective, because the gap between them was longer than it should've been. However the good (?) news is that overall the cancer has shrunk significantly. Not disappeared, though - there ARE still a few 'hotspots' - but the consultant says they're under control. Not growing, not shrinking - just there. Stable. For now.

So for the meantime she's done with chemotherapy and all the other medication she was on. The only remaining thing is the stoma bag - a tube drains one of her kidneys into a little external bag, and this was set up last Christmas because the hospital thought there was a problem with one kidney. They did some tests recently and seem fairly sure that the kidney still isn't working at all - so the stoma bag stays (no idea why, my father-in-law has only one kidney and he doesn't have all this faff on). She'll have a raft of tests every three months to see if the cancer's started growing again.

But most importantly mam is looking really really well. From seven stones and starting to get a bit skeletal in January/February, she's put weight back on and is looking really healthy and happy again. Her arms are still quite skinny but the rest of her's fine!

Thankfully she didn't lose any hair during chemo so that hasn't been a problem - the main issue now is that she gets physically tired very quickly. She used to be a human dynamo in the supermarket (which is obviously where I inherited it from!) - in, targeted raid on the bits she wanted, pay, and out. Now she takes it a lot slower and has to lean on the trolley, and she's tired afterwards - but a cuppa later she's ready to do something else.

We were 'psyched' and ready for her to have an op to remove the last of the cancer hotspots after the chemo, but didn't really feel like celebrating when they said they weren't doing that. We've had so many false dawns since this whole thing started, I can't face another one. I don't want to seem pessimistic, I'm just keeping things in check - she's only in PARTIAL remission.

Mam herself has said that she's being a realist - she knows the cancer will start to grow again and the consultant will have to decide what to do. Until then she says she's just going to enjoy this new kind of normality for as long as it lasts.

Monday, 22 March 2010


For what feels like the first time since this all started, today we've had some good news.

Mam had a CT scan before her first chemo to act as a 'baseline', so the oncologist could use it as a reference point as her treatment progressed.

Recently, after her third session of chemo, she had another scan, to see if the treatment was helping. And today she went back to see the oncologist for the results.

She's been in better health lately - no sickness and less exhaustion after the last lot of chemo, which was a huge relief to her; also her appetite has been coming back in leaps and bounds. Not only was she not sick after the last chemo, but she kept eating healthy portions and is almost back to pre-illness size meals!

My older sister was optimistic, but I've tried not to get 'too far ahead of myself' in case it was just coincidence.

But the news today was good; after a 40 minute wait to see the oncologist, and another 10 minutes while her scan results were faxed over, it turns out the cancerous 'nodules' have all shrunk in response to the chemo, and mam's oncologist pronounced himself very pleased with her progress.

The surgeon will meet with his team next Monday and decide whether to operate immediately and remove as much cancer as she can, or if she should have more chemo before that happens. They also want to remove the one remaining ovary - so whatever happens, when this op goes ahead it won't be insignificant and she'll need looking after when she's discharged.

But just for a change it's such a relief not to get that bad news 'kick in the teeth', and mam agreed that the horrible side effects of the chemo - all the sickness and exhaustion - have been worth it to get this far.

Please God let it all stay positive!!

Thursday, 4 March 2010

Onwards and upwards

Mam had her third session of chemo just over a week ago. Normally she has chemo on a Wednesday, is fine on Thursday and Friday, but spends most of the Saturday and Sunday being violently ill. Mam mentioned it to her consultant who said she should try taking two of her anti sickness pills at a time, rather than just one - and it seems to have done the trick...she wasn't sick at all this time. Still physically exhausted, yes, but not sick - and she said she can cope with that. And on top of this, she's still eating well!

It's lovely to phone to talk to her and she still sounds relatively perky, rather than sounding completely done-for. She had a blood transfusion on the same day as her chemo this time - which sounds dramatic but apparently isn't - it's just because her routine blood tests showed she was slightly anaemic, which can happen when you have chemo.

And the day after 'chemo 3' she'd felt so well she'd gone for a walk with dad; not a hike or anything, just round to the local shops and back so no more than about 2/3 of a mile - but a massive step, considering she literally hadn't even been past the front gate since last October, unless it was to go to hospital. She'd enjoyed it and said she wanted to walk up to the community centre the following day, but the weather scuppered that.

So things feel relatively positive right now.

The next stage is a CT scan on Wednesday 10th March, to compare with the one they did before chemo started in January, to see if the chemo is killing off the cancer or not. So while we're all hoping for some positive news, I'm kind of preparing myself for bad news. Ever since this all started, it feels like good news has always been followed by bad, so it wouldn't be the first time. If the cancer HAS started to shrink, the next stage will be an op to remove as much of it as they can.

Fingers crossed.

Monday, 15 February 2010

Exactly as expected

Hubs and I popped back up north recently for a long weekend - we picked the timing to coincide with when we expected the sickness (as a result of her chemo) to kick in. Based on her first session, she has the chemo on a Wednesday, is fine for a few days - if not better than usual because the steroids help - then on the Saturday the sickness hits her like a wall.

We arrived on Saturday lunchtime and the sickness had arrived bang on time, she'd already been ill before we arrived. Bless, she said she felt awful about being ill while we were there - until I told her that we'd specifically chosen that weekend so we could look after her!

Hubby went to see his parents along the road for the afternoon and I stayed with mam and dad. Just did a bit of housework for them then read the newspaper. Dad went for his usual afternoon nap but ended up being 3 hours; but mam's said before that when me or my sister are there, he relaxes better knowing someone else is in the house. Mam just dozed on the sofa but she said it was nice to have him 'out of the way' - not popping in every couple of minutes to check she's okay. Bless him, he worries.

Hubs and I popped out on the Saturday evening for a break, drove to Whitley Bay to watch the ice hockey: Newcastle Vipers versus Cardiff Devils. Fast and furious, much faster than EPL standard (which was fast anyway!) and a brilliant match to see.

When we got back at 10 they'd both gone to bed - mam put in her notes that she keeps for the district nurse that she'd been sick six times that day. But it seems to help a little by breaking her tablets up into pieces and she's often more able to keep them down.

Sunday morning we popped out to the supermarket to get some shopping for mam and dad. Funny how normally I can take or leave supermarkets...but doing it for mam and dad didn't bother me - I actually got some pleasure out of it - being able to do the simple things like their shopping, thinking of things they might like. Went back and cooked us a roast beef lunch. And surprisingly mam was itching to have some! It was only a single slice of beef, a Yorkshire pud and some gravy but she said she thoroughly enjoyed it - and what's more it stayed down all afternoon! Tucked her into bed and made sure she had everything she needed - she lay down and just looked SO literally sick and tired, and took so much pleasure from the simple act of going to bed. That's when it really hit me how ill she is - not even so much from the cancer, but the chemo. But small mercies: she'd only been sick 3 or 4 times, so fewer than yesterday. Turned mam's light out and I knew if I went to be somewhere on my own I'd cry, so just bit my lip and went back downstairs to see hubs and dad.

Monday morning and I looked in mam's room at 9am but she was spark last, a bit of proper rest for her. I knew she'd be up before long for the district nurse's visit so left a cup of her favourite Earl Grey on her bedside table and we went to pick up a parcel from the sorting office. Big sis had sent mam a fruit basket - the gift company hadn't marked it 'perishable' so it'd been sat in the sorting office for almost a week! Went to see the inlaws to say goodbye, then back to mam and dad's. District Nurse arrived and agreed with me that mam's sickness seems pretty severe, so she should tell the chemo team in case they can give her stronger meds.

Travelled back down south and phoned mam as soon as we got in - already she sounds perkier and hasn't been ill at all - so the improvement is definitely happening.

And now we're back home, and my sis has just had the weekend up there - mam hasn't been sick all week but the exhaustion has kicked in. And today she said mam's appetite is definitely back on track!

So now mam has almost two full weeks until the effects of chemo 3 kick in - during which time hopefully her appetite will hang around and she can keep building herself up. She was 10 stone when she was the new year, only just over 8. Here's to two weeks of stability.

Monday, 1 February 2010

Up and down

Spoke to mam on Saturday and she sounded.....absolutely fine. Just like 'the good old days' - before all this kicked off. Didn't sound tired, didn't sound ill - if you didn't know what was going on you'd never have guessed how ill she is. She said she's been feeling okay the last few days and it cheered me up to hear her so chirpy.

Today she went to the consultant for a routine pre-chemo visit - Wednesday she goes for her second course of chemo, but at least now she knows the 'routine' - a few days of feeling quite well (the effects of the steroids) then the sickness and exhaustion hits with a vengeance. So by the time that happens this time around, me and hubs will be up there for a few days, to look after her and dad, and take the weight off dad as a carer.

Talking of dad, I saw my older sister at the weekend - mam's district nurse had suggested that dad is basically being mam's carer, so they should apply for a proper carer's allowance - so one of the MacMillan nurses came round one evening specially to help them fill in the paperwork, which I thought was a lovely touch. I hope one of the MacMillan nurses will be around while I'm there at the weekend, it'd be nice to meet and talk to them.

Last night I watched "Mo", a drama-documentary about the life of MP Mo Mowlam from the time of her brain tumour diagnosis, to her death. Brilliant production, and Julie Walters was superb in the lead role - talk about method acting, she shaved her head because she wanted the hair loss to look more authentic than a skull cap! I was okay until literally the last 5 minutes when Mo was admitted to hospital for her final days, got a bit sniffelly and had to ask hubs to turn it off. Couldn't stop myself from thinking that one day in the relatively near future, that'll be my mam - be it at home, in a hospital or a hospice. I think the whole thing of knowing mam's second chemo is imminent, and talk of Macmillan nurses just got to me.

I know it's not going to be easy this weekend, I know she's going to have sickness and diarhhoea, I know I'm going to have to cope with seeing her at her lowest - but I want to see her.

Monday, 25 January 2010

Onwards....and sidewards

So there we go - mam's had the first, much anticipated course of chemo.

Despite the snow (and the north east had an awful lot of it) and problems with the patient transport, mam made the 10 mile journey to Gateshead Queen Elizabeth hospital on 13 January to start the next part of her "journey".

Link: how does chemo work?

The initial plan was to give her two types of chemo - carboplatin and taxol. They tried the carboplatin, but she was in a lot of pain. Apparently it's not an uncommon reaction - some people just can't tolerate certain types of chemo.

So they moved on to the Taxol and it went in okay - along with steroids, which you get when you're on chemo, to counteract how tired it'll make you. And by that afternoon, she was back home.

My brother phoned her the following day and apparently she said she felt really well - the best she'd felt in ages! Must've been the effect that the steroids were having. That was Thursday the Saturday, the nasty side-effects finally arrived - sickness (green!), diarrohea and she couldn't sleep - another, less nice side-effect of the steroids. I spoke to her on the Sunday and she sounded so weak, and tired...and had to run off to be ill, mid-conversation. It's days like that that it's awful being so far away on the end of the phone :(

I asked if she had any appetite - she said not really but the previous day she'd had a craving for good old-fashioned fried bread so had made herself a slice and said it didn't touch the sides!! Hearing her tell me about that, she sounded like a naughty schoolgirl who'd pinched the last slice of cake :-o She said she was just over 10 stone when she was first taken ill in early October, but the consultant weighed her before the chemo and she's only 8 stone now. And not eating much. Told her to remember to use the liquid 'meal substitutes' but it's still worrying.

Saturday 23rd, called again: she still sounded weak but not as bad as the last time we spoke. Sounded like the sickness was tentatively starting to wear off but she said how fed up she is with feeling rubbish...she said she felt so bad one particular day that, in her words, she "wanted to die" - it's hard hearing her talk like that. I want her to fight it and see the positive side of why she feels like this, but I can understand why she's so fed up with feeling ill. She also said she'd had a fall - luckily indoors, in her bedroom, but she'd fallen and bumped her forehead. Dad was in the bathroom next door, heard the noise and came to find her on the bedroom floor, and put her into bed - but I couldn't help thinking of it in terms of a fairly frail little old man 'rescuing' a frail little old lady.

Put the phone down feeling a bit low and worried, but an hour later older sis called - she'd just spoken to mam as well, and mam told her she'd stood and baked a couple of batches of scones!! So maybe all the stuff she said to me - maybe she was just 'unburdening' herself, getting it out of her system - and she realised she didn't feel so wretched after all?

And now it's nearly 2 full weeks since the chemo, so hopefully things are improving - and it's another week until the next chemo on 3rd February. I told her to make sure the consultant knows how bad the sickness was, maybe he can prescribe stronger anti-sickness meds?

So it's good that the chemo's finally underway...but I hate thinking of how ill it makes her. But three days after her next session me and hubs will be up there for a long weekend so I get the chance to be there for her, for dad, and to really look after them :)

Tuesday, 5 January 2010

More detail

I had a funny feeling when I spoke to mam on Tuesday that there was more to it - the chemo - than she'd told me. Couldn't put my finger on it, but felt that it wasn't down to me to question, and that I should trust her - she's been honest with us so far, we know how bad it is...would she hide anything?

Well it turns out my instincts were right, but just for a change it wasn't another kick in the teeth waiting to come and get me. My older sister emailed me and mentioned that the hospital will be giving mam the more aggressive chemo that they mentioned a while ago as being an option (so I'm guessing from this that they're using the tactic of 'going in with all guns blazing'). The less agressive option was using only one of two possible treatments - carboplatin or paclitaxel. The more agressive option is to use both at once - which is what they're going to do, starting next week.

She'll have three sessions of chemo, each three weeks apart. Shortly after the third, she'll have a CT scan to see if the cancer has shrunk and if they can go on to perform an op to remove as much of the cancer as they can. It'll be a significant op, similar in magnitude to the one in November when they removed her ovaries, and apparently she's not looking forward to it - but mam being typically mam, she knows it's necessary and that's all there is to it.

So with two chemicals being pumped into her every three weeks, she's going to feel really dreadful for most of the next three months, followed by a big op. We've just got to hope against hope that it's all worth it.

Monday, 4 January 2010

Moving on...gradually

Mam finally got to her chemo registration appointment at the Queen Elizabeth hospital today. My brother went all the way up there just to take her to that - he wasn't able to get up at Christmas/New Year as he'd already agreed to spend that time with his inlaws in Norfolk, so to go all the way up north was a nice touch. He was mam's first child so I suppose there'll always be a sort of 'extra closeness' there, and I know mam said she gets a lot of comfort from it when he's around.

First of all this morning they pumped some sort of chemical into her kidneys, and she had to have a scan every hour for about five hours, to see how the stuff was going through her. She was happy enough to toddle around the hospital on her own, bless - which in itself is good to know, because I know there have been days when it's all she could do to walk upstairs or from room to room.

Then, this afternoon, the chemo registration. The outcome is that she has two appointments next week - one on the afternoon of Tuesday 12 Jan, which is just a quick one to give her some test results, and then the actual chemo on Wednesday 13 Jan which will take most of the day.

So at feels like things are finally moving in a positive way.

Saturday, 2 January 2010

Happy New Year?

(Pic, left - mam on Christmas day 2008 - four months before the first sign that anything was wrong)
New year's eve makes me wierd at the best of some extent it's always felt like "enforced jollity" - you stay up late, drink and lark around because it seems to be 'the done thing'. Jools Holland doesn't even do his NYE programme live, it's done a couple of weeks in advance.

This time around I decided well in advance that this NYE would be different. In all likelihood it's going to be a pretty horrible year: mam has advanced ovarian cancer and has already had a series of ops just to find out what's wrong and 'stabilise' her overall condition, which have left her looking nigh-on skeletal, pale and incredibly fragile. This year she'll hopefully (if she's well enough) begin a course of fairly severe chemotherapy which we know will leave her feeling even more rough than she currently does. Me, my older sister and brother are stuck 200 miles away, have done and will do what we can given our leave allowances and the logistics of financing 400 mile round trips.

I guess there must be a decent chance that the chemo won't achieve much, given how far the cancer has spread already (from ovaries to bowel, stomach and bladder). And even if its success is limited, it might take so much out of mam that she decides not to persevere (I know there's already been one night in hospital recently when she felt so ill she thought she was 'slipping away'...turns out she was just dropping off into a deep sleep. What if the cancer spreads even further? What if she's not even well enough to start chemo in the first place? So there must also be a decent chance that 2010 will be the year we'll lose mam - and have to work out how we move forward, with an 82 year old dad who just wouldn't be able to cope with running a house, but is way too proud to move to a care home or even just have a home help.

All things taken into account, I just couldn't see why I should be looking forward to 2010 because there's a good chance it WON'T be a 'happy new year'.

So I spent NYE baking, and avoiding all the TV/radio coverage of impending celebrations, watched 'normal' tv then went to bed to read, turning the lights out at 11.20. Must've been just nodding off when fireworks were let off for midnight but they didn't last long and I nodded off again.

Woke up the following morning......and I don't feel like I missed out on anything.

Phoned mam in the evening of January 1st and she sounds really perky, just like "normal mam". My brother is travelling up on Sunday and taking her to her kidney ultrasound tests and another attempt at chemo reg on Mon.