I never expected that

Great news for me yesterday: my CT scan was all clear.

2011-11-17T22:26:03Z

The CT scan was on Monday so I was amazed to receive the result so quickly. I was at work when the good news came through and I was all teary and emotional. Fortunately they know me and were happy for me too.

Although on one level I was expecting everything to be OK, on another I had been getting a bit anxious. The tears were of relief and also an acknowledgement of what a tough time it’s been. As this was the first scan since surgery (looking at the date the surgery was exactly a year ago), it’s great to know for sure that there isn’t another phase of treatment round the corner. I can happily consider myself cancer free.

So, now I go forward with quarterly blood tests until another scan and colonoscopy this time next year. And then who knows?

In one of my blog posts over a year ago I mentioned counting my blessings. I feel as though there are a few more to count these days, for not only have I had this good news about the scan, but we are also in the countdown to Bruce’s return to a job near home. No longer the weekly commute rendering me a single parent during the week and reducing the girls to tears with each Sunday evening departure. Having him home is the best Christmas present. (Of course he is no sooner back then he’s off to the States for a couple of weeks but we won’t hold that against him!).

Meanwhile, I’m continuing with the fundraising efforts – the latest event being a Vie party at home held earlier this week with a fundraising game and commission going to Macmillan. With Coffee Morning, walk, Vie party and general generosity of friends, I’m happy to report that my total raised is more than £1500. Lots of ideas for next year too so I’m sure it’s going to be a total to be proud of.

Fundraising updates will be posted on my justgiving page:

http://www.justgiving.com/year-for-macmillan

A huge thank you to everyone who’s been supporting me with the fundraising, and indeed for all the support friends and family at home and on-line have shown me throughout this testing time.

Colonoscopy clear

2011-11-02T14:43:16Z

I'm happy to say today's colonoscopy was all clear and there is nothing to worry about. It wasn't a particularly pleasant experience - I had a dehydration headache before going in (and it was all running late of course), then was sick from the pethidine - but it was great to get it all over and done with without need for follow up.

In case anyone who is facing similar is wondering, I opted not to have the sedation (Midazolam) and it really wasn't too bad. Perhaps the pethidine alone was sufficient.

Next on the list is the CT scan in a couple of weeks.

Right. Off to have a nap now, having had a relaxed late lunch out with B. Time to get some energy back before the girls come home from the childminders and B has to head off back to Wales.

Thanks to everyone who sent me best wishes and good luck messages.

xxx

Colonoscopy on Wednesday

2011-10-30T21:08:31Z

I've gone through a mix of emotions since fixing the appointment for my colonoscopy the other day. Not looking forward to the day before - fasting and Klean Prep (to clear out the bowel - advice to stay near a loo), and not looking forward to the investigation itself (going through the stoma will be weird but probably less uncomfortable than the scope through the rectum last year).

It is a reminder of how life was turned upside down some 18 months ago when a similar investigation showed that the suspected internal piles were in fact a far more sinister tumour. I want to put it all behind me and forget about it, but the fact they are still keeping an eye on me and that this type of investigation will be annual for a few, as-yet-unspecfied-number-of years, brings back some of the trauma and is a reminder that I can't assume that I have absolutely, 100% definitely seen the end of this disease.

That said, I certainly behave (and feel) as though it is a thing of the past so having gone through a small wobble when faced with the reality of these tests I am now back to business as usual.

On the positive side - where I normally like to focus - the investigation is to be done by the surgeon who performed the operation on me this time last year. I am very pleased about this as I hadn't really thought it could be an option and rather expected to see someone else (less senior?). I have every confidence in her so if there is anything remotely not as it should be then I'm sure she'll be on the case straight away. She can admire my tiny keyhole scars that she made so neat while she's at it!

B will be coming back from his work in Wales on Tuesday night to be with me on Wednesday which is great. It's some major week for him too - but more of that another time perhaps....

It's all coming together

2011-09-29T21:29:12Z

First wave of second hand books have been delivered to the Hall, the pile of cakes is stacking up nicely (lemon drizzlex3, coffee and walnut, carrot cake, gluten free chocolate brownies, pain au chocolat all at this house and more cakes known to be at the neighbours and on their way), flowers for the tables have been collected, balloons and bunting are in the car. It's going to be one hell of a coffee morning!

Publicity has gone well: articles in the MK News on 14 Sept and MK Citizen on the 15th, posters in town, fliers in school book bags, facebook, etc. Also, for Macmillan generally on the radio on Monday (about 1 hour 15 mins into the programme: http://www.bbc.co.uk/programmes/p001d7bp on 26/9).

People have been so generous already with their time, money and contributions. I'm really looking forward to seeing a number of friends who expect to come and I haven't seen for a while. The regional fundraising office have been great with providing Macmillan goodies (T-shirts, balloons, pinnies, bunting, etc). Now it's up to us to raise heaps of cash for this fantastic cause.

It will be the official launch of my fundraising year, although really this started as soon as the planning got properly under way: www.justgiving.com/year-for-macmillan

Good luck everyone who is hosting a coffee morning. x

Chemo finished!

2011-07-12T20:31:31Z

Happy day! I took the final Capecitibine tablets this morning and I am now a drug-free zone! Cakes at work and cards and flowers at home.

I have an oncology review on Friday and I think I'll be booked in for a scan or two - but this marks a new phase: checking up on me instead of treating me. Just over one year since diagnosis and just under one year since treatment started.

Thank you everyone for your support and kind words over the past year. I've been so lucky with my family, friends and colleagues during this time - and people on this site posting words of encouragement too. Lots of love to you all. x

Chemo nearly finished

2011-07-04T21:33:39Z

I am nearly half way through my final cycle of chemo. Taking oral capecitibine twice a day until Tuesday morning next week.

At the start of this cycle my blood counts were on the borderline (1.5 for neutrophils and 2.9 for WBC). This is the seventh of what was originally planned to be eight cycles. However, I've had delays along the way due to low blood counts so I have been reassured that I have had a good dose of chemo now and there is little evidence that any more will make any difference to what should already be a positive outcome for me. Therefore, I requested at the last review that the final cycle is cancelled.

I really wanted to finish the chemo before the school holidays and if there hadn't been any delays, this would easily have been possible. I didn't want to be taking pills away camping with me at the end of July (not convenient and keeping the medication secure and away from an inquisitive 3-year-old not entirely straight forward), so the request to cancel the final cycle was mainly psychological and convenience for me. If my counts had been any lower it would have been cancelled anyway, and the oncolgist did not try to dissuade me.

Apart from the affect on my blood, I have been lucky not to experience side effects with capecitibine: no nausea, no diarrhoea, slight dryness but no particular problems with sores on hands and feet, no mouth ulcers. Energy levels good: work, activities with the kids, ballet twice a week... more or less life as normal. I think any tiredness has been life in general and not chemically induced!

Looking forward to the summer when this phase is over. Looking forward to our holiday and some great parties!

Good luck everyone who is facing tough times.

Lots of love,

Sixth cycle of chemo started today

2011-06-07T21:09:15Z

Last week I picked up all my medication (capecitibine tablets) ready to start the next cycle of chemo, but following a repeat blood test was advised not to take it because my white blood counts were too low.

I had another repeat blood test yesterday, and after a couple of calls to the chemo suite I was given the go-ahead to proceed with this next cycle. My bloods are still a bit borderline (WBC 2.8 instead of the prefered minimum of 3.0), but the doc was happy for me to start - which I have duly done this evening.

I wonder if this could be the last cycle. Originally the plan was to have eight, but if my white blood count is low at the end of this cycle and any more delays are necessary, then the decision will be to cancel the remaining cycles. I will follow the advice I'm given, and I know low blood counts aren't a good thing, but I can't help hoping this will be the final one.

I should say, however, that although my blood count is low, I am feeling fine. Apart from the occasional medical appointment it really is life as normal - work, home, exercise, social life (although the social life could do with a boost - looking forward to what should be a couple of cracking parties this summer!).

In the meantime, one of my jobs is to keep the allotment watered in this dry weather. I am therefore enjoying seeing this sign which appeared on the plot last week. No. I can't take the credit, If it wasn't for B there would be precious little growing there except for drought-tolerant weeds!

A year since diagnosis

2011-06-02T22:04:54Z

This time last year I had no idea what was in store for me. I only knew that I had a tumour and surgery would be required - probably with a course of radiotherapy and/or chemo.

12 months later I've been through chemoradiotherapy (5 and a half weeks of radiotherapy with low dose chemo), a few weeks off and then major surgery (permanent colostomy and successful removal of tumour and all surrounding area), and most recently 5 out of 8 cycles of chemotherapy. I didn't realise what a long haul it would be.

Mostly, I think I can be proud of myself for coping so well. I've managed not to get too scared and imagine the worst. I'e been fortunate that I've not been too poorly. I have experienced some unpleasantness but have bounced back each time - whether from radiotherapy 'burns', surgery or chemo side effects.

The latest situation is that my sixth cycle of chemo was postponed because of low blood counts. Another delay. Any more delays after this and the rest of the chemo will be cancelled. I had a blood test on Friday which showed my bloods were borderline. This was repeated on Tuesday and the assumption was that my immune system would have had a few more days to recover and it would be OK, but in fact they were worse.

For those who know about these things - my neutrophils were down to 1.34 (should be at least 1.5 for chemo) and my white blood count was down to 2.0 (should be at least 3). I have not shown any obvious sign of infection, but I was rather tired. Apart from that the past few weeks have been great - lots of energy for home, work and play!

There is light at the end of the tunnel. I am quite well on oral chemo only (even if my bloods are low all other side effects are minimal). The last possible week for taking medication will be the first week of the school holidays. And that should be it. Now all we need is for B to get a new job (preferably back home and not a weekly commute away) and we can start to feel more settled again. He's been fantastic support through all this even at a distance (as have been my parents - big thank you - and other family and friends), but how much better it would be if he was home. xxx

Goodbye PICC line - oral chemo only from now on

2011-05-09T11:53:15Z

I had my oncology review on Friday, and following low blood counts, there has been a change in my chemo regime. The IV drug (Oxaliplatin - nasty side effects) has been cancelled and I proceed with oral chemo only (Capecitibine - very few side effects for me). If my blood counts continue to be low then the whole lot may now be cancelled.

But for now - after one cycle of capecitibine only - my bloods have recovered to an acceptable level. I picked up my tablets for the next cycle this morning (cycle 5 of 8) in record time and even better had my PICC line removed.

It is a relief to no longer have to plan around the bad weeks (caused by the tiredness, nausea and pins and needles side effects experienced with Oxaliplatin). Over the past few weeks - when I have either had weeks off while my blood recovers, or have been taking tablets only - I have been well and active. Great to know that there can be more of the same from now on.

Some people had mentioned an injection available to boost white blood count, and some people may wonder if it is a problem that I will no longer be having all the drugs that were originally recommended.

I asked about the injection. This is very useful for improving neutrophil count, but has no effect on platelet production. I was having problems with both. Also, my chemo is adjuvent - ie post-surgery. On the last scans there was no evidence of cancer anywhere other than the area which has since been completely removed. This means my chemo is precautionary. Having had three cycles of both drugs and now continuing with capecitibine only, I should still be on a very effective treatment. And it is better not to put further stress on my bone marrow.

Now I must dash off as it is P's sports day. A few days ago I wasn't sure if I would manage to get to this. So happy to be able to go now. x

Busy, busy but a bit in limbo

2011-05-04T21:29:56Z

I'm now officially half way through the chemo (yay!) and this most recent cycle (the fourth of eight) was by far the easiest. Not surprising really, with my white blood count being so low, I was only permitted the oral drug (capecitibine), and for me the side effects of this are minimal.

My next oncology appointment is on Friday and I don't really know what to expect. With my white blood count being low even after two weeks from the end of the cycle (between cycles 3 and 4), I'm assuming a dose reduction for both Oxaliplatin and Capecitibine. But what if my counts are still low? I gather there are ways to bring white cell count back up but these have not been discussed in my case yet. Perhaps I will be given more weeks off between treatments. I don't really want delays, but on the other hand I want to follow whatever advice there is about the best course of action in my circumstances. So, I feel a bit in limbo. I don't like not knowing whether I'll be functioning next week (in work, picking kids up from school/nursery,etc) or not.

However, in the meantime I've been feeling well and making the most of it!

A number of highlights: seeing friends in Durham; sharing Holiday School memories in York (sad in some ways as it was a memorial event, but lovely to see so many friends from HS past and present); local street party; sunshine in the garden; getting back to cycling....

I am happy to say that our street party raised in the region of £150 for Macmillan. There was a raffle, cake stall, and card stall to help cover the costs of the party with any extra left over going to Macmillan so it was great news to reach that amount. Thanks to all involved.

Here are a couple of photos. I think some people who've not seen me for a while wonder if I have lost my hair but don't like to ask. Well, as you can see from this one of me with P, that I still have it!

Low white cells but cycle 4 started anyway

2011-04-18T21:13:48Z

A strange day. Although I have had two weeks off chemo (three if you count the drug-free week which is part of the normal cycle), my blood count is still not good.

I went into Northampton early for repeat bloods to be taken in case there was an improvement since Friday's blood test. In fact, on one of the measures - neutrophils - the count was actually worse than two weeks ago when my chemo was postponed. Today the count was 0.5 (ideally should be 1.5 for treatment to go ahead), and the total White Cell Count was 1.6 (should be 3).

After a telephone call with the oncologist, the chemo nurse gave me a couple of options: more time off the drugs, or proceed with tablets only: no oxaliplatin.

I didn't take long to decide to go ahead with capetibine tablets only. This means that I have now started cycle 4 of the treatment (the half way mark), and I avoid the most nasty side effects of Oxaliplatin. I am very pleased to know I won't be suffering from the pins and needles and to be able to eat cold stuff - icecream! - this week (not possible on Oxaliplatin due to cold sensitivity). Also no 'blues' following steroid treatment, and the exhaustion will be less too.

All in all a good outcome but I was very tired when I got back from the clinic. I had psyched myself up for the treatment and even though it's good be starting cycle 4 knowing the side effects will be much easier to handle the whole process is emotionally draining. And it is not ideal to have such a weakened immune system either.

By late afternoon I was already making the most of not having had oxaliplatin as I cycled to nursery to collect S and bring her home on the back of the bike. Being back on the bike is a bit of a new thing anyway since last November's surgery, and certainly not something I'd have even thought about doing on day 1 of the previous cycles of chemo.

I now look forward to the rest of the week knowing it is going to be much better than anticipated. I'll have to get back on the bike to make up for all the chocolate egg consumption!

Love to all. x

chemo postponed again

2011-04-07T20:57:43Z

On Tuesday I was due to have my fourth cycle of chemotherapy. Unfortunately my blood count was too low again and it has been postponed (White Blood Count, Neutrophils and Platelets all low this time).

I was going to be delayed one week, but asked if I could put it off two weeks. It is P's birthday party on the 16th April and I really didn't want to be at the lowest part of the cycle for that. Also, she has her ballet school show coming up. Again, a delay of two weeks suits much better as the week of the show should be a good week for me at the end of this forthcoming cycle.

I don't feel unwell, and made it to ballet myself for a demanding class yesterday. Hopefully by having a couple of weeks off the drugs my blood count will come up even more and the chances of further delays will decrease. The doctor wasn't particularly keen for me to delay an extra week but could tell that it was what I really wanted.

Must get off to bed for an early-ish night now. In-laws are visiting for the weekend so need to make sure the place is respectable tomorrow! x

Counting blessings but patience being tested

2011-03-29T20:54:59Z

Last week I was full of the joys of Spring. Well, weren't most of us? How wonderful to be outside in shirt sleeves enjoying warmer, sunnier weather at last.

I was really counting my blessings: cycle 3 much better than the previous two (helped by stronger anti-sickness drug and lower dose of chemo), getting some energy back, managing to get into work, remembering to water recently planted strawberry plants at the allotment, enjoying watching P and S playing outside, etc. Happy to just be getting on with life as normal really.

And in general the sunny mood has lasted into this week. A good day at work yesterday, looking forward to a night out for a colleague's leaving do at a comedy club on Friday, ballet tomorrow.

Unfortunately there was a bit of a blip in the positive attitude today when I found myself unexpectedly back over to the Oncology Suite when I'd really hoped that the district nurse visiting would be the only treatment-related activity this week.

The district nurse found that my PICC line was leaking when she came to flush it this morning. So all the things I'd hoped to get done at home today - including work - were abandoned as I set off for yet another long wait (more than 2 hours) in Northampton for it to be repaired. I knew as a walk-in extra patient I might have to wait (they were short-staffed and running late again), but that doesn't stop it feeling incredibly frustrating. I then had to have an x-ray to see if the line is still in the right position but I came home before finding out the result so have that pleasure yet to come. I had already rang nursery to book S in for an extra hour and didn't want to have to extend it further so rushed back just in time.

The census form which I had left until today was a bit depressing too. The question about rating your health in general. If it wasn't for the chemo I'd feel great, but I guess there would still be a question mark over my health until I have enough scans to give me the all clear. Plus, I don't think B has had a great day either and we miss having him here with us during the week.

BUT, I go forward into the rest of the week, still counting my blessings and maybe tomorrow will pass off without a hitch!

Cycle 3 started Tues - a bit better so far...

2011-03-17T13:17:39Z

My platelets were back up so cycle three could go ahead on Tuesday. It was a bit of a shambles in the clinic and I'm glad I was on the ball and kept asking questions as it could have turned out quite differently.

For my 10am appointment they were already running an hour or so late. I was due to take a new anti-sickness Aprepitent an hour before the chemo so I asked about this the minute I sat down in the chemo suite just after 11 even though they weren't ready for me even then. Just as well because I don't think they would have looked at my notes until they were actually ready to start delivering the dose, and that would have set me back another hour.

Actually, I was set back another hour and some because when they were ready to start prepping me for the IV delivery I asked if I was to be given a lower dose given the low platelet count last week causing delay, and borderline neutrophils the cycle before. Well, it wasn't on the notes but fortunately the nurse checked with the Dr who said I must be put on the lower dose - reduced by 25%.

So, I went off for a cup of tea and cream bun while the pharmacy made up the new batch. Still, I'd rather be delayed but end up with the lower dose, than go home on time with a wretched few days ahead. Even at the end of it all, there was a further delay with them sorting out the right dose of capecitibine tablets for me, and I never did make the switch from one milder anti-sickness to the other (cyclizine instead of metoclopromide).

I am relieved to say that I feel much better this time round than last. The stronger anti-sickness medication (which is specifically for the acute phase sickness post-drug delivery) seems to be doing the trick. I think I am just getting the slightest hint of nausea when it is wearing off. Or maybe I just need more consistent sleep - S decided to wake me at 5.25am this morning. No wonder I'm having to go back to bed once the girls are off to school and nursery.

When I have been up and out of PJs I seem to have a bit more energy than the previous cycles too. I just hope this lasts and it doesn't all go down hill tomorrow when the course of Aprepitent and the steroids wear off.

It's a long haul. If I have no more delays the final cycle should be given at the end of June. I have many plans for the summer - a little birdie tells me there is a party to look forward to on 9 July so I hope to be fit enough by then, And then there is Holiday School... etc etc

Cycle 3 postponed until next week

2011-03-08T20:40:29Z

A quick update on recent events:

My PICC line was fitted yesterday. I have a bit of discomfort around the point of entry and it bled quite a bit overnight. It was cleaned up and flushed through at the clinic today so all seems to be well.

I'm still getting used to it and showered with my arm wrapped in clingfilm this morning! The local pharmacies seemed a bit mystified when I asked if they sold plastic sleeves to protect a dressing. I got the impression from the nurse who did the PICC line that it would be easy to get one in Boots. Obviously not in a small local branch.

I have had an active week or so leading up to what should have been my third cycle of chemo starting today (work, ballet, cooking big dinners, etc) and was feeling reasonably well. It was a bit of a surprise and disappointment then to find out that my platelet count is low (58 and it should be 100+) and the chemo wouldn't be going ahead after all. White blood cells OK this time.

So, I'll be trying to get back into work mode over the next couple of days and should make it to ballet again tomorrow! I was tempted to go to a class I've not been to for ages this evening too but in the end I decided my arm was still too tender from the PICC line insertion and so I enjoyed a pancake and a glass of wine instead.

It will be rather nice to work from home tomorrow and not have to make another trip to Northampton. I was there on Friday, yesterday and today (today was 3 hours and that was without even going ahead with the treatment!).

Hopefully I won't have too many other delays along the way. I'm sure I'm not the only one in my situation who wants to get it over and done with as quickly as possible. Looking forward to the summer when it should all be over.

xxx