G-CSF - douze points!

The G-CSF seem to be working, in that I am feeling good!! Interestingly I have developed tonsillitis again- this is the third time!! BUT- I do not have a temperature, or feel anywhere near as bad as last time, which is fantastic.
We went out last night to a Eurovision evening at the Lovells, which was great fun, and we stayed until 11.15 when the results were in. Nigel was supporting Russia, so had to do an ice skating pirouette finale to the evening........
When we got home we realised it was the first time I had been out in 9 weeks!!! So, I am obviously delighted that I felt well enough, and had a great time, and hopefully will still have 10 days of feeling good.

Nigel is still managing to find fat, and I am still symptom free from the G-CSF drugs- so I am really grateful for that. And today am feeling much brighter and alert- so, if I can stay free of bugs and out of hospital I could have nearly 2 weeks of feeling reasonable. Hooray (in faith of course!!)

My head must be getting heavier!

Well, I managed to miss my daughter's birthday party by being asleep on saturday, so decided to skip church as a family on Sunday and try to have a good day together. I had a dozy day on the sofa with her coming in and out to me, and managed to do the 'cake and presents' thing, though not altogether 'chirpy'!
I paid for it yesterday as I could hardly wake up at all.
Today the sleep is still not leaving me- I am napping endlessly and feeling really drained. I am also waking up with really sore ears the whole time- I think from sleeping so heavily, though it is bizarre to be happening so regularly. Maybe the hair gave more protection before!!
Nigel managed to find some fat on me last night and the first injection was fairly painless which was good, as I did not particuarly feel like going through the process! And -so far so good in terms of side effects- no back ache or flu symptoms yet! I am not sure if there is a cumulative effect, or whether I can say that this is going to be OK- let's hope it is the latter!
I could do with it all kicking in now, and to feel like I am turning a corner- for some reason this time is feeling a really slow process.

3 down , 3 to go

Yesterday I had chemo in the morning- a change from my last two sessions- and it went uneventfully. So much so that mum, Nigel and I all went out for lunch afterwards, enjoying the weather. 4 o'clock I went to bed for 2hours feeling ghastly. At 7 o'clock the lunch made an unattractive reappearance- but I felt significantly better for it and have been feeling a lot less nauseous ever since. Today just back into tired routine- have already slept from 11 till 3- and have started with the horrible taste and dry mouth.
I would like to think I was half way through this, but I think I have to get to the end of this cycle before I can claim that- although it is nice to know that I only have 3 more actual chemo days left.
Nigel has been taught how to give the injections from monday onwards, and is obviously well up for it- that is probably why he took up dentistry! The instructions tell him to try and find some abdominal fat which will of course be a challenge for him!! Apparently alongside a bad back they can also give severe flu like symptoms- fever, chills and body aches. Hurrah again!
I am trying to remain as positive as possible, but sometimes have difficulty finding an 'up' side to any of this!!

Good News

I went to Weston Park today for more blood tests and to chat through my next chemo session. The PICC line was well behaved, so I didn't need stabbing again, and the blood results were great- my liver function is back to normal and my white cell count was also high.
They have decided that it would be good to avoid another hospital visit if possible, so they are going to give me some GCSF injections from day 5 onwards. This will stimulate the white cells to grow more quickly and make me less susceptible to infection. So, the district nurse will visit me on tuesday and teach Nigel how to stab me on a daily basis for 5 further days!!
Because it stimulates the bone marrow it can cause really bad backache (hurrah.......!), but an advantage of Nigel administering the injections is that he can do it late at night and I can take a painkiller and sleep through the discomfort. Sounds like a plan-we shall see if it works!! Apparently if it is too painful they can give me a different formula next time. And they probably will have perfected my medication by the last visit!!!
So, session 3 on thursday, and then a further 3 to go..........

observations on hospital life

My bed was at the kitchen end of the ward, and from there I had a wonderful experience of life I had not previously known.
Some things I learnt.........

Tea cups and saucers rattle on their way into the dishwasher, and out, and on to the tea trolley- this happens at least 8 times a day.
The ice cube machine rattles all day long, especially first thing in the morning and about 4 pm when endless jugs are filled.
The kitchen is a great place for nurses to congregate at 4 am for a chat.
When a nurse says ' I will do your drugs at 6 am' it is code word for 4.45am- every time!
Sometimes empty beds need changing at 1 am, and this will involve lights and chatting.
Stainless steel may be hygeinic in a kitchen, but quiet it is not.
Some patients have unbelievable belching habits- louder than a bear!- and can continue throughout the night without stopping.
If 6 am is a reasonable time to wake everyone up with a drink, then 5 am is a reasonable time to load the tea trolley.
Hospital may sound a good place to lie in bed and sleep all day, but in reality very little sleep can be had, and you will return home exhausted!


However, there were many things I was grateful for.....

At least 8 cups of tea a day! Very British- 'how about a nice cuppa?'
A jug of fresh iced water changed twice daily.
Scrupulously clean sheets changed daily.
Room mates to share the boredom and share a laugh.
Nurses who worked day and night to look after me.

All in all, I was grateful to be cared for so well, but will be packing earplugs for my next trip!

Quickie

Just to say I was released from hospital this afternoon, but blood count still very low, so I need to be careful and go back in if I feel at all unwell. 4 nights was long enough - so please pray I can remain OUT !

Aaargghh!

Well, my cough developed into a sniffle and a congested head, so I phoned the hospital just to check, and spent yesterday morning having blood taken and being prodded around. My white cells were VERY low, so they decided I needed to be hospitalised for my cold!!
I was not very pleased, but gradually felt worse even as I was in hospital, until I was shaking violently and freezing- asked for a blanket and they stripped my bed, opened the window and snatched my wig off!! Apparently my temperature had spiked dangerously high and they had to cool me down, so now I am stuck in for at least 3 days on intravenous antibiotics.
Taking blood was the usual fun- in the morning I had sister of 'Mrs Bullsfoot' (from biopsy day) who stabbed and prodded and seemed to be doing backstitch with her needle!! In the evening I had young Mr 'I'm quite good at this' Freshman, who despite warning attempted the arm no professional has ever found blood in.
'OOh I think I 've found one' he exclaimed. ''Think' does not inspire me with confidence' I squeak- 'what else could it be?' 'Well, it could be a tendon or the head of the biceps.......' he nervously ventured.
'Are you sure you don't want to try this other hand???'
He eventually concedes defeat and starts slapping my hand. Mid slap he says ' we are taught never to do this'........I am not sure what the appropriate response should be at that point- though the thought of slapping him back did occur to me! But then he hit the jackpot, and all was forgiven!
I could not think of much at all to be grateful for yesterday, though somehow a mug of Horlicks and some Bourbon biscuits sent me to sleep with a smile on my face.

I have not been blogging due to lack of energy!
Had chemo on wednesday and although not sick, have been nauseous and very, very tired since then. On tuesday I thought I was turning a corner, but yesterday had 3 naps in the day again!!
The nausea has now gone though which is brilliant.
I have, however, now developed an irritating dry cough, so am praying that does not develop into anything worse as my blood count is on its way down again and I am approaching the time when I am vulnerable to infection.
I now have a serious backlog of paperwork, which I need focus for over the next few days- so please pray I don't get distracted by beds and sofas- they seem to attract me very easily at the moment!!!

Feeling grateful.

1 For fabulous friends and family who are supporting me with food, flowers, cards, prayers and phone calls- thanks guys. The food has been particularly appreciated- though Emily has been rolling her eyes at the amount of healthy cakes we have been given-sweet potato, carrot, and butternut squash so far! ' The world is upside down mummy- who makes cakes out of vegetables???'
2 For my wonderful husband who has rearranged his week so he can do childcare and allow me to sleep when I need to. (I met a single mum in surgery who had to continue doing the school runs and food, and would have appreciated the odd cup of tea being made for her!)
3 For being able to hug my kids- (when I was radioactive I was not even allowed on the same couch, then with two sore arms it has been too tender for a while-so now that is great again.)
4 For being able to wash and dress myself with ease- (amazing how I have taken that for granted before.)
5 For the amazing NHS and their care for me- including the wonderful new anti sickness drug I have this time- all I need now is an anti-tired one!!
6 For being able to wash my 'hair' in under 5 seconds!!!

Having met many others down at Weston Park, and seeing their circumstances, I am very grateful to be in a loving community and so well supported, and although I know this is a difficult period to go through, I honestly feel I have it easy compared to others. My heart is filled with compassion for the folk who are doing this alone.

Doing the deed!

The baldy bits before we started.
Pulled this out in clumpfuls before the scissors attacked!
Attacking with gusto!
I know there is only half of me- but you get the picture presumably!

The deed is done!

Taking the hair off was not as traumatic as I feared- hurrah!
We set a chair up in the kitchen and draped a towel round my neck, and Nigel and the kids attacked me with an array of scissors and clippers, under the watchful eye of my mum. The kids were brilliant- I had wondered whether they might freak out, but they were wonderful.
' You don't look as bad as I thought' - Tara
' You don't look too bald, and you're still Mummy'- Emily
'Can I sweep the floor?'- Daniel
I had given Nigel permission (for the first time in 23 years) to lie to me, but he seemed genuinely very pleasantly surprised, and was wonderfully uplifting, which made everything much easier. I had half expected to put on a brave face in front of everyone and then creep off and weep, but the choosing was definitely a good idea.
I was surprised there was so much stubble- and more surprised by the friction it causes on a pillowcase- I was unable to turn over!! Also surprised by how cold it all feels- really tingly like I have been using menthol shampoo !
So, Nigel now sleeps with 'bald woman in hat' !!!
And 'bald woman in hat' is certainly sleeping a lot!

Woohoo to boohoo!

Many thanks to all you praying people out there, and also to those positive thinking and well wishing people. Today was much better than anticipated and I definitely was peaceful throughout the whole process.
This morning involved a lot of poking and prodding by a doctor who, in the words of my mum, 'had a hand like a bull's foot'! She ended up having to take 3 biopsies, as apparently the needle didn't work properly!! And also had difficulty getting the clip into the tumour- 'oo dear I can't get this in, let me just try again'........ And all whilst feeling the anaesthetic hadn't quite taken yet. Followed by a mammogram which squashed into my wound site and was fairly traumatic!
However, mum did a great distraction technique and we were quite jolly despite the circumstances!
Then a quick lunch in Starbucks where we met up with Nigel, and went up for the chemo together. Apparently they don't normally allow two visitors in but we had 'mega amazing nurse' who put us in a private area as it had more room and less distractions, and even made us all a cup of tea! She was rather lovely and I managed to hand over my arm without a fight which was great.
They have changed my medication to try and reduce the nausea and vomiting, so hopefully this will make the next few days more bearable, but my liver function is still rather abnormal so will need close monitoring over the next few weeks.
I have also made the decision to ditch the hair today- we are going to do it as a family later tonight. I felt it was important for the kids to be part of the process, and I feel that choosing to shave it off gives me an element of control and is hopefully more bearable.

more hospital visits!!

Today I am back at Weston Park for blood tests- checking my liver function and cell count are normal before I get more chemo tomorrow.
Tomorrow is a mammoth day! In the morning I am having another biopsy taken, and a clip inserted into the tumour. Apparently the chemo can be so effective that the tumour shrinks to the point it cannot be found in surgery- and they then excise using the clip as a marker. Sometimes, even pathology cannot find any evidence of the tumour- I think that would be a great prayer!!! After the clip is in situ I will need another mammagram to check it is in the centre of the lump and then I think they will allow me lunch!
At 1pm I trot over to the Weston Park for chemo number two.
They are hopefully giving me different medication to come home with to combat the nausea and vomiting, so the whole experience may be more pleasant than last time- which would be fantastic. However I am still quite anxious about the day and would appreciate prayers for courage and peace.

hurdling again!

The antibiotics are working miraculously, and I am back onto solid food-I think I ate porridge for 4 meals in a row!! And my painkillers are dramatically reduced too which is great.
However, my itchy scalp is now shedding big style!
When I run my fingers through my hair big clumps fall off- not much holding it in place anymore. It is still looking reasonable, but actually becoming a nuisance as it is all over my pillow, and my clothes, and falling in food etc- so I think I only have a few days left before I make the decision to just get rid of it and get on with the whole 'wig and scarves' routine.
It is weird how something which I was expecting and 'ready' for, has been totally shocking- and I do not feel at all 'ready' to be bald.

Whoopee!

After 4 hours of poking, prodding and testing, it seems I have tonsillitis but am not neutropenic. In lay terms, I have pus on both tonsils and a mump like appearance, but my blood count is not so low that I need hospitalisation. Apparently I would have had to stay in for 3 days on an intravenous course of antibiotics. As it is I have come home with some tablets- much more preferable methinks!
My liver function has been affected by the chemo though and they need to monitor that before the next dose of intravenous bleach!!

Nosediving again

Never a dull moment in the Mallon household.
Yesterday I had a bit of a sore throat which developed overnight into an absolute raging one with ear ache and swollen lymph glands in my neck.
My blood count is very low this week and I have no resistance to infection, so I am having to go into hospital for professional help this morning. I have no idea whether they will keep me in to monitor me, but please pray that they can sort out the pain rapidly, as the sucking ice cubes routine is already wearing thin!

Spoke too soon again!

Having thought I was getting much stronger, I have spent the last 2 days wondering if I am becoming nocturnal! I got up with the kids for breakfast, went back to bed and woke up at 11am. Then slept from 1-2.30, woke up for an hour and slept again from 3.30-5pm!!!!
The lethargy is absolutely unbelievable - I can hardly drag myself into the kitchen for a drink.
Apparently it is cumulative - in the 6th cycle I can't imagine I will be able to get out of bed!
Most people have a week feeling OK, a week feeling low and tired and a week picking back up again before getting knocked back at the next chemo session. Oh joy......
Hopefully next week I will have some stronger days again.

I am feeling stronger every day post surgery, and having some very good days so far- which is brilliant. I am a little tired and my mouth feels like it has been pebble dashed (very rough and weird) but aside from that and losing some taste buds I have been pleasantly surprised how well I feel.
The whole thing about chemo is its unpredictability- some folk take to their beds for 18 weeks and some (for that read Jane Tomlinson!) can apparently manage to cycle across Africa whilst in the middle of treatment. It seems that given 6months to live motivated her into learning to run- and she went on to complete 4 full marathons and an Ironman............
Not sure a marathon is high on my agenda as a 'must do before I die' activity- but I am motivated to think through what I might do instead.
My life just seems slightly more mundane- kids have been off school for ages (go back tomorrow) and then I have a mountain of paperwork and accounts to tackle- can't quite see how I drop it all to go jump off a cliff or sail the Atlantic!
Any suggestions ?

Chickens!

The kids have been great about missing out on our planned trip to France- they have made do with some croissants and Camembert, but it is not quite the same!
So, today we decided to collect some long awaited chickens for the garden. We had promised them for some time, and Easter seemed a good time to get them. We thought they would be a great focus for the kids too during the next phase of my treatments.
We drove out to a local poultry farm and they chose out one each.
Dan chose a grey speckled one called Spike, Emily's is pure white and she has called her Fizzy, and Tara picked out a gorgeous brown hen -Caramel. So, the garden is full of clucking and squealing and the poor hens are trying to settle in. The kids were told that if they pet them and stroke them they will become very tame and friendly!!!
I really will have to get on with the pics........