Chuckle? We did!

We just managed to have a couple of days away with the caravan in Clumber Park, (Sherwood Forest) and then spent the Bank Holiday weekend with some good friends- plenty of great food and wine, and the kids had loads of fun. They are very resilient and have had a great school holiday despite the circumstances. We had had great plans of being in Europe but obviously have not been able to plan anything in advance, and even though we had some fabulous offers of houses to stay in, have been tied to Sheffield for the most part of the six weeks off school.
I have to go in to hospital on Friday this week for my pre-op assessment and my counselling session- fortunately I have got the two events on the same morning which is great, but the hanging around waiting for appointments has been quite infuriating. And next Thursday I am due for surgery if all goes well this week.
Last week I managed to put my back out again- it is usually an annual occurrence, but coincided with my two good weeks before surgery- arrghh! I guess I have spent 20 weeks sitting around and then, feeling better, I started to feel a bit more active. And Hey Presto! - my muscles obviously did not feel active! So, that too meant I was not able to do as much as I wanted with the kids. I was stuck in a chair, forced to watch Great Britain's medal haul at the Olympics!!! Amazing timing- got 14 medals during the acute pain stage of my back!!!
And then, Clumber too was great!
Daniel LOVES the whole caravan experience- winding the legs up and down, fetching the water, connecting the electrics etc, and it is fantastic to have something he feels so good about. We loaded all 5 bikes (optimistic that I could manage a trip out!) and set off.
When we were all set up Emily asked if we had packed the chuckle puck! Having never heard of one, we questioned why we would need one!
'To play with'
Oh, who would play?
'Me and Daniel'
What game would you play?
'I can't remember'!!

An hour later she pipes up
'I remember- the game is badminton'
We had, amazingly, packed a chuckle puck (and racquets!) but managed to lose it high in a tree which, apparently, is a very sad event. She couldn't understand why we laughed so much- 'you are supposed to chuckle, not cry' we said!!

Maybe I am only 6 years old!

I am beginning to feel a lot better, though am still napping in the afternoons like an old woman! I am getting amazing hot flushes- a complication of being pushed into the menopause by the viciousness of the drugs. Apparently my age makes it unlikely that my ovaries will recover, and I will probably be on 5 years of Tamoxifen, which also gives 'power surges'- so looks like I will be wearing layers for a while yet!!
My hair is growing back steadily, though is quite patchy and very grey and not growing anywhere quickly enough for my liking! The taste buds are also making some progress which is great, and I am beginning to like fruit and vegetables again, which will prove useful in my imminent fitness campaign!
But I am delighted that I have hung onto all my nails and not had any horror stories there. However, I have lovely white semi circles around the bases of the nail beds- corresponding to my rounds of chemo, but they remind me of the rings on a tree- a testament to how long I have been in this yuck for!

Apples or melons?

The contrast dye, which was injected on the day of torture, is apparently taken up differently by malignant and normal cells, so is a very accurate measurement of cancerous activity. As it is 2cm diameter, they will take out a piece 4cm in diameter which hopefully gives a clear margin all round. I believed the choice was between a bacon slicer and an ice cream scoop, but seems it is going to be an apple corer instead!! The core will be removed down to the muscle layer, and then apparently they can shift some tissue around to help fill the gap.
I have to go in for pre-op counselling where they will discuss everything in much greater detail and show me some photos of what to expect.
It seems I will be left with a dent, which can be filled at a later date if it seems too deformed but, according to the surgeon, they can remove 10% of breast tissue and get a really good result.
'And, with the size of your breasts, we should be OK'!!

Woohoo!

Met with the surgeon this morning who had the results of the MRI. The active tumour has shrunk to just 2cm which is amazing and means I can just have the lump removed without the full mastectomy. Hoorah!
I will still have to have all the nodes out from my armpit and will still need radiotherapy about 4 weeks after the surgery. The operation is provisionally scheduled for 4th september. I will need a wire inserted into the lump under x ray on the day of surgery, to give the surgeon an idea of where to cut, so they need to liaise with the radiography department. If not 4th it will be on 11th Sept.
This is obviously all great news, and means I can plan a bit of summer holiday with the kids, and then schedule for hospital once they are back at school, which works fairly perfectly. Praise God!

Aaaargghh!

Went for the MRI scan today which turned out to be a really traumatic time.
I am now feeling like I should be on an episode of House having had an MRI, CT scan, bone scan, mammogram, ultrasound, biopsies, surgery and chemotherapy !!
I phoned up yesterday to find out all about the scan, and thought I was prepared.......
They needed to inject me with some contrast dye, so I told them I had a PICC line in and asked if they could use it. They sent for the PICC sister.
The nurse thought she would 'have a go' at finding a vein while she was waiting for the PICC sister to arrive. My wrist swelled up like a golf ball as she admitted defeat!
The PICC nurse arrived to tell me the news that we couldn't use the line as the dye needed to be injected under pressure and would burst the PICC. My good vein was now scuppered by a golf ball, my right arm cannot be used because I have no nodes on that side, and I was left with a few bad choices left. Not only that, but because the dye was injected under pressure we would need the largest canula available. I was now in a totally unflattering gown and whisked upstairs in a wheelchair for a few more bruises and a cup of tea! The inside of my wrist looked hopeful but would be very painful- I agreed entirely on the pain, but no vein to be found. ' Perhaps we could go back through the one with the golfball and the bruise, but that would be painful too!' Again I agreed, and again, no vein. Eventually nurse 3 is called in and finds something on the back of my hand- and then another wheelchair trip to the scanner.
I was told to bring in some music of my choice as I would be lying in a tube for 1/2 hour and was looking forward to some restful soaking and recovering from the stabbing. I handed over my CD to discover I had taken an empty box with me!!!! It also turned out that I wasn't going to be relaxing on my back, but lying on my front, with my boobs hanging in a cage, my forehead on an uncomfortable rest, and my arms stretched out in front of me.
'I'm sorry, you've got the awkward way to do this- it's not usually this bad.......'
3 hours later, and I was released again, but feeling seriously shaken by the whole experience and wishing I had not decided to go down to hospital alone!!

New Wine

New Wine was a great time away with the family, but I was much more tired than I was expecting. Don't know why I didn't expect it really!!!
I had thought I could spend time lying down in the day, but the weather was so hot, and I had lots of folk dropping in for a chat, so had difficulty getting the rest I needed. That being said, I just modified my expectations, and hardly went to any meetings. I made the morning Bible readings which were excellent, and I went to one and a half of the evenings, and sat in a gorgeous recliner chair the rest of the time!
Now I am back to a mountain of laundry!
Also I have had my appointments through for the next phase of treatment. I have an MRI scan on Tuesday morning, and meet with the surgeon on Friday to discuss my options for surgery. No idea how long the MRI takes, but my letter suggests I bring a CD with me!!!

I am just about coming out of the first awful phase of the cycle, and had my last injection tonight- Hoorah!
No more naughty Nigel stabbing me in the stomach with a sharp stick!
My tongue is absolutely revolting and furry and my taste buds are really playing up this time, but I have only 2 weeks to go until I start feeling muuuuuch better.
My hair has started growing back (well, with the eye of faith I can detect some fuzzy stubble) but I have given up with the wig this week due to the chemically induced hot flushes which are driving me mental! I oscillate between freezing and roasting, and there doesn't seem to be much in between, so I sit with a hat and a blanket and keep putting them on and taking them off- oh, how it whiles away the time.........
The next phase is for me to have another MRI scan, as it is the most reliable measure of how much the lump has shrunk. Then I will meet with the surgeon- provisionally on the 8th august- to discuss options for permanent disfigurement.
Dignity and vanity disappeared a long time ago, so I feel surprisingly cool at the moment, but maybe when my brain cells wake up I will feel differently about it all.
We are off to New Wine tomorrow, to sit in a caravan for a week in Newark, so hopefully will be nice 'chill time' with family and friends, and a relaxing break before the next load of treatment starts......

Kathi is coming- woohoo!!

I had the last chemo today, and all went well, so I just have to get through another 10 day hangover before I start climbing up the other side and back to normality.
When we were in the States I had a personal trainer who lived in the next cul-de-sac, and we became good friends. She would kick my butt in the day, and we would drink margaritas and mudslides in the evenings!
Ever since she heard I had cancer she has been desperate to fly over and hold my hand and look after me, almost perilously booking a ticket before remembering she would need a passport!! However, her passport is now winging its way to her, and she will soon be winging her way to me. HOORAY!!
No small coincidence that she will arrive as my steroids have finished, and my taste buds will be back- so I will be up for some light exercise (and some heavy drinking- tee hee!!). We chatted for an hour the other night and I was lamenting about my steroid weight gain. Kathi's response?- oh that's just a big poop and a couple of trips on the treadmill!! That's what I love about you Kathi- relentless optimism!!
SO, I am already enjoying plotting day trips which will incorporate some sort of activity- to counteract the Yorkshire Puddings, fish and chips, and margaritas, and REALLY looking forward to living life again for a few weeks before surgery.

Last one looming...

Tomorrow I go down for my last blood test/ check-up and final chemo on thursday. At each check-up they measure the tumour to see if it is shrinking. It has reduced slightly, but so far it is not under 5cm- which is the magic number we are aiming for.
At the beginning we were told there was a chance that the lump could be removed without a full mastectomy, but only if it shrank considerably. Last time I was disappointed to see it had not gone under 5 cm , but was told that it is now unlikely to contain any live cancer cells, and more likely to be just residual fibrous tissue, which is encouraging, but not encouraging enough, as I would still like to avoid a mastectomy if possible.
Our family prayer is that the surgeon gets to use an ice cream scoop and not a bacon slicer!!

New Trick!!

Well!!!
I have recently discovered why we have nasal hair......
It is actually very strangely cold without hair- so I am glad it is ' summer' as inhaling is very draughty- almost like using a Vicks sinus stick!
But the other fun thing is that now my nostrils stick together like suction pads!!!!
Don't ask how I discovered it, but it is providing endless entertainment for the kids. Nigel thinks I look like I have had major surgery, and the kids think it looks like a bird's beak!
Bizarrrrrrre!

Look good, feel better....

Today I had a makeover, courtesy of the charity 'Look good, feel better'. All patients at the Weston Park are offered an afternoon of beauty tips and makeup lessons, and are given a HUGE bag of complimentary cosmetics from the big names- Chanel, Yves St Laurent, Clinique etc. The idea is to make women who have lost hair, eyelashes, eyebrows etc feel attractive again. I quite enjoyed the session, and particularly liked seeing the transformation of other women- some of whom admitted to not wearing cosmetics in over 30 years, and were almost unrecognisable at the end of the afternoon.
I came away with face care, makeup and fragrance which apparently is all worth about £250, and so is a wonderful treat. The contents of the bags vary as donations are not predictable, and so it is always a surprise for the demonstrators to see the goodies.
They were most excited by todays fragrance- Dior's 'Pure Poison' !!!
'How fabulous' one declared.
And there was me thinking I had had enough of poison without dabbing it on daily..........

I have turned the corner when it comes to feeling 'green', but am still quite tired and drained. I am, however, managing to get back in to work part time, and am busy making list upon list for the trip to New Wine. The kids and Nigel are going, and I may end up there, lying on a caravan bed in the rain!!! But, somehow, it is still my responsibility to organise them- and, to be honest, I would feel better knowing they had taken everything with them. So, I am actually quite enjoying the stimulus and focus of something other than a battle with cancer drugs- I am really bored of that one now!!
And life continues to be ridiculously hectic around me- it is hard to put everything on hold indefinitely, as you can just feel it mounting up and becoming even more stressful. Still, three more weeks and I should be coming out of the final phase of bleurggh- hopefully never to be repeated again!!!!

Still green.....

As much as I am excited there is only one more chemo to go, when I am in the middle of the bleurghh I can't imagine that I have to do this all over again!!. My nails are hurting again, the aches are shooting round my legs, I have the revolting taste in my mouth, and I am basically lying on the sofa feeling green.
I do not even have the capacity to read a book, as my concentration is so limited.
Yesterday I decided to check out daytime TV!!! Discovered there is not much on, so for some masochistic reason stuck to the cooking channel. Somehow watching people cooking and eating seemed to make up for the fact that I cannot taste anything. I am surviving on bland foods as they don't seem to get so distorted by the coating on my tongue- so jacket potatoes, cheese on toast, crisps and ice cream all work really well- but can't face fruit or vegetables as they are so acidic and bitter. Add to the increase of steroids and increase of appetite and it is a good job I only have one cycle left, as I will be absolutely HUGE if I carry on at this rate!!

Poison Party!

On Tuesday I had another very long wait for my consultation with the doctor- I was in the building for 4 hours and my appointment was about 10 minutes! However, I got chatting with quite a few other women and we had quite a raucous giggle- so much so that when I was eventually called through and complained about my wait time was told that I had been called a lot earlier (but obviously did not hear!!!). Still, it was quite jolly!
Today we still waited 2 hours for chemo, but it turned into a party as it was Julie's last session. She brought in muffins and sweets and the nurses reserved seats so four of us could be together. They made us cups of tea and we giggled through the session- a lot more fun than just watching the poison drip into my veins.
I guess there is a real camaraderie with others going through the same process, and as we are all on the same day every three weeks faces become familiar. Julie and I were trying to plot being in hospital together for our surgery- which would be a hoot, but not sure how possible it would be.
One more chemo to go -WHOOPEE!!- so, in four weeks time I should be over the worst of the horrible side effects. Then just surgery and radiotherapy to follow!!!

Tomorrow I go back to hospital for blood tests and get ready for more chemo on thursday. I have been really well this last week, and thursday looms sooner than I would wish- the thought of doing it all again is quite depressing! Still, I have only two to go, and will be finished in less than 4 weeks, so I remain positive and am counting the days.
My eyelashes are falling out quite rapidly, and as a result my eyes are quite sore- I feel constantly like I have been crying. They are red and swollen, and the eye itself is quite gritty and watery. The eyebrows are beginning to thin too, but I assume there will be no side effects there!!
I have actually been at work this last week in an administrative, business role, and really enjoyed it. It has been a good focus for me, and motivational, but there is so much yet to do, so I am hoping to remain well for much of the next two cycles so that I can maintain a presence around the building and get on top of a lot of outstanding paperwork.
Oh, and my fingernails are a lot less sore now, and still very much in place- so hopefully they will remain so!!

What planet do we come from???

Having put life 'on hold' for so long, we relented and allowed Emily to have some friends over last night to sleep and have fun. It was supposed to be a good weekend healthwise for me, and just a few sweet kids.
However, Nigel and I have had an amazingly stressful week at work, Nigel had surgery on thursday (just moles removed, but still involved theatre, gowns, and deep stitches..), and I am still feeling pretty bleah and achey. But, we forged ahead with true determination!!

In my experience, sleepovers fall into 2 categories: 1. kids sleep 2. they don't!!
You guessed it, we got the second sort!!
A trampoline, Spongebob movie, Chinese banquet, and chicken chasing evening of fun soon turned into our worst nightmare, and involved blood, split heads, vomit and inconsolable crying!
Two kids had left the building by 10pm, and the crying continued despite comforting mugs of hot chocolate. In the end I moved a sleeping bag downstairs and lay with them all wondering what planet I was on to think this would be a good idea!!!
I got back into my bed at 4 am and heard them all awake at 6.30!
A cooked breakfast, some morning TV, and a quick tidy up, and life is almost back to normal, despite amazing sleep deprivation layered on top of stress...............hmm.. I suspect an afternoon nap is in order later!!!

Too good to be true!!

I have had a great weekend- been up and dressed, making conversation, and eating with the family. All remarkable considering how I have been at this stage on the last 3 cycles. However, last night all my muscles and joints started really aching, and I had an uncomfortable night trying to sleep. It is like a dull ache everywhere, and then random sharp twinges in various bones - they don't last long, but shift quickly to another area. I almost feel I could deal with it better if it was just leg ache, but this dotting around is quite distracting and hard to get a handle on- is it my ankle or chin, or eye socket next?
My fingernails are also feeling really bruised- amazing how that happens so quickly after treatment. I couldn't get the plug out of the bath last night- as my fingers won't grip, and I really struggled this morning to tie up Emily's hair-twisting the bobble was too painful. That feels really pathetic, and I am hoping that they settle down- otherwise the next 9 weeks could be interesting!!

Horror stories, part ii- but I am, so far, invincible!

We had a delayed start yesterday, as the pharmacy took an hour and a half to send the correct drugs through! But once I was connected to the drip, the warnings began!!
'You must be aware that you can suffer an immediate allergic reaction to this drug. Here is a call button. The first 30-40 ml of drug are the most critical, but a reaction can take place at any time. If you feel any of these symptoms........press the button, I will stop the treatment, give you oxygen and bleep the doctor.......'
'Are you not going to stay and watch over me????'
'No, your mum can watch!!'

So, the drug drips through- 250ml in one hour. I watched the drip, and mum watched me, and we held our breath. After 100ml I was still alive, and we relaxed a bit, cracked open the wine gums, and chatted to the woman in the next chair. It turned out she has been through all the chemo, surgery and radiotherapy and was now on her years treatment of herceptin.
She had the GCSF injections and was in so much pain she had to buy a mattress topper and sleep on a quilt, because of the bone ache, and could not stand the water of a shower on her thighs or legs! So, I am VERY grateful to have avoided all that. Apparently another patient was actually on diamorphine with the pain- and I escaped- hurrah!
I asked her about the radiotherapy- well, that was okay until the 2 weeks after the treatment finished and then she came out in huge water filled blisters- yummy.
As we were on a roll, of course we had to ask about the nail deal too. 'Well, I have hung on to them, but 5 of my toenails are black, and my fingernails have split- not just at the ends, but right down the middle.....!!!'
I usually quite like being forewarned about things, so I am not taken by surprise, but there seems a huge amount to look forward to before the year is out. Hopefully I can remain invincible! But then I feel overwhelmed with guilt as this woman has been through so much, and I am asking to be spared of even losing my eyebrows.
I am trying to remain in jubilant mood however and not wallow in guilt. Yesterday I felt amazingly well, no slump of ghastliness, absolutely NO nausea, and have woken with an appetite and energy I have not had at this stage of the other cycles, so I am hoping that this drug will be the one I have least problems with.
I also have a dull ache and 'swirling' feeling around the tumour, so I am imagining the drug attacking away and causing the beastie cells to die- hoping the drug to release its viciousness directly into the lump, and not anywhere else in me!!!

More great news (well, not really!!)

Went to Weston Park today for my blood tests and clinic appointment. They gave me my steroids and started explaining possible side effects of the new drug.......
Apparently they will not give me the drug if I forget to take the steroids before I go, as there is a likelihood of anaphylaxis on administration- which sounds fun! And, apart from removing the rest of my hair, and tingling and numbness in my extremities, a strong likelihood of taking my fingernails too- urgghhh!
'How likely?'
'Well, it doesn't happen to everyone. Your best bet is to avoid washing up during treatment!'

Sadly, I went on a website (stupid girl) and read a few thread comments which were less than exciting.
'I have lost 3 fingernails already, has anyone else had this experience?'
'I managed to hang on to my fingernails, but on the last cycle I lost my little toenails........'
I guess it is the same process as losing hair, but one which I had not considered, so another shock for me to process, and lots for you lovelies to pray about!!!

Sorry not to have been posting much recently- there hasn't been a lot to report.
The extra G-CSF drug drastically improved my health this cycle, and apart from still being a little tired, I have felt relatively 'normal' for the last 10 days. This has been brilliant and gives me great hope for the rest of the treatment.
HOWEVER........
They change my drugs totally this thursday, and I will move from FEC to Taxotere for the next 3 cycles. Apparently it is quite a vicious drug and I will need to take steroids for 3 days before the chemo, as there is a high risk of allergic reactions and severe sickness. Whoopee!
The extra steroids (I already take them after the chemo for a week, but this time will take them before as well) are likely to increase my weight gain as they increase appetite quite markedly, and of course I have not got round to marathon training yet, so am basically sitting on a sofa or lying on the bed for most of the cycle. So, my calorie burning potential is a long way from ideal!!
Also, any remaining hair is likely to disappear during this next round. I have very little left anywhere on my body, but am still clinging to my eyebrows and eyelashes, and would very much like to keep them!! Otherwise I have images of turning into a bowling ball!!

So, although I have a good idea what to expect over the next 9 weeks, some people react very differently to the two separate drugs- I might be better, and there again I may not tolerate it very well at all.
The good news is that I am now half way through the chemo treatment, and can start counting down from thursday onwards, which will be a huge relief .