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........

Woohoo!!

Breakthrough day!
Today I managed to shower, wash hair and get dressed all on my own!!!!
Mobility is great in my right side now, though my left arm is looking in need of medication as the inflammation has not subsided yet, and the weekend is looming.
I celebrated my big achievement with a little foray into town and treated myself to some tops which cover the tube hanging out of my arm, and some makeup to draw on new eyebrows when the moment arrives! So now nobody need ever know I am ill!!!

Hospital runaround.

Went to the Weston Park cancer hospital this morning where they prodded and poked my PICC line and still could not get blood. So they injected me with the enzyme and sent me away for an hour for it to work. Then I trotted over to the Hallamshire for my consult with the surgeon. There were traces of cancer in just one of the nodes and the others were clear. The doctor was very encouraging and positive and it obviously could have been muuuuch worse- so we are feeling fairly buoyant about that. Then back to Weston Park for the PICC line- woohoo, they cleared the problem and took an armful of blood!! They also diagnosed some phlebitis, a bit of inflammation in the arm which I am controlling with Nurofen and heat packs and hoping to resolve without antibiotics. The achy shoulder is much better though which is great.

Feeling good

Just a brief update to say I am feeling good! Have taken off the steri strips from the surgical wound, and taken the dressing off the biopsy site, and my right side is MUCH more mobile and comfortable which is great. Still a bit of discomfort with the PICC line- my left arm and shoulder are a little achy, but we shall see what they say tomorrow. It would be great if that discomfort would disappear too, otherwise it will be a long 18weeks!!

13th visit to hospital.....

well, this morning did not go too great! My optimism at avoiding vomiting was shortlived and I have been feeling fairly rough. I had to get to the hospital by 8.30 am today which meant I could not wake up slowly, so felt awful throughout the procedure. I had to have biopsies and blood tests, and decided to take Tara with me today-as she is harbouring a thought that I am on regular secret shopping trips (after all , why would I be needed at hopsital 13 times in 26 days??). She did great, and the nurses were wonderful with her- and I think she was quite intrigued by the whole process. However, they could not get blood out of my PICC line - which rather defeats the object of having one inserted! It appears I may have a fibrin sheath around the vein preventing the blood from being released, which will need dissolving with enzyme. I obviously did not look up to the task today though, so they are getting me back on wednesday to try and resolve the issue. Wed. is also the day of the node biopsy results- so please pray for clear nodes and a working PICC line.

one down, 5 to go...

Conquering my fear of floral Parker-Knoll chairs I duly went and sat among some very ill patients and awaited the dreaded drugs. Fortunately, they have visitors chairs and Nigel was able to be with me all the way through the procedure. It felt a little like going to the slaughter though, and I realised that as soon as I handed my arm over I would be assaulted with toxic chemicals.
There was a student nurse watching my procedure and the sister asked her why she thought one of the drugs was bright red. After some thought she answered 'is it because it's lethal?'......The sister duly diffused the comment by saying 'Yes it is lethal to the cancer, but that was probably not an appropriate comment to make in front of a patient!!'
Each of the three drugs were administered by injection (into my wonderful line) and took over an hour to give. Each one was preceded with a huge list of symptoms I may feel as it went in- ranging from sore bottom(!!!) to headache, to a feeling of drinking way too much alcohol. Of course, once the thoughts have been placed in your head you sit there waiting for something awful to happen.
Apart from a tight chest and coughing fit I came out realtively OK and managed a 10 min walk up the hill to the car. Once at home the alcohol one kicked in and my faithful servant got me into bed as I was unable to do anything!
Spent the night with waves of nausea and clamminess and a general felling of horrible toxicity, but have woken feeling just woozy and light headed. So, am encouraged to think I may have escaped what can be 3 days of severe nausea and vomiting.
Have been out with Tara and Emily and chosen some pretty scarves, and am picking up my wig this afternoon- so all prepared for the worst.
Will post some pics soon.

The PIC sisters.

I know they sound like a band of some sort, but these wonderful nurses walked me through the PIC line procedure without hiccup, or pain- just a little squeamishness, light headedness and general fainty feelings!!
It was probably all the gowns and gloves and green drapes which did it- or maybe hearing the words 'ooh your veins are over 1cm deep in your arm', ' now we will just slide the tube up towards the heart', 'just rest your chin on your shoulder as sometimes the wire goes into your head and this will stop it taking a wrong turn'.............. eeek
Nigel was also suitably supportive, but even for him there were moments when he rather wished he had eaten more breakfast!! But the nurses sprang to and gave us cups of tea at just the right moments and jollied us along most professionally!
Anyway, it is now in, and I am all taped up. I have an enormous yellow glove (a vet's one!) which goes right up to my shoulder and apparently if I secure it with an elastic band and clingfilm I can shower in relative normality!!! I am not quite sure what is normal about wearing a luminous glove in the shower! Alternatively I can pay a relatively small amount for a plastic waterproof cuff which just covers the patch. Hmmm - dilemma!!

We also discovered that I am not carrying the HER2 receptors- which means I am not suitable to take the wonder drug Herceptin. Have to say that I was a bit disappointed by that, but apparently it could be an indication that the tumour is not as agressive as it could be- as the receptors are more commonly found in very agressive cancers. So, I am slightly consoled, and still praying for the lymph nodes to be clear- I get the results on wednesday 9th.

Chemo starts tomorrow and my anxiety is lessened by having the PIC line in- I worked out that I have at least 18 more occasions where they need to give drugs or take blood, so my morning's procedure will hopefully save a lot of digging around!

Update on Sue

Well, we have been inundated with people wanting news and update on the breast cancer, so have decided to re- launch the blog as a means of keeping folk informed.

We received the diagnosis (mid March) of an agressive, invasive cancer of large size (measures 6x5 cm). One of down sides of having big boobs is that such a lump can be hidden fairly easily!!
Since then there have been many hospital visits. There was some concern that the cancer may have spread, so I have undergone bone scans, CT scans (to check the soft tissues), a chest x-ray and surgical removal of 4 lymph nodes in the armpit. So far, we have had clear results from all but the lymph nodes- and we wait 2 more weeks for those results.
Surgery took place under GA on friday, but I was released on saturday and feeling fairly pain free which is great.
The most discomfort was caused by the canula they placed to administer the drugs, as I have terrible veins, which even the most experienced of doctors are challenged by.
The oncologist suggested today that I have a semi permanent line placed in a vein tomorrow so that chemotherapy can be administered and blood taken without all the digging around which commonly occurs.
So, I go in in the morning for a gruesome sounding procedure of inserting a wire into my arm and feeding it up towards my shoulder, taking an x-ray to check positioning, and then feeding a plastic tube over the wire and taping the whole lot in place. Nigel will have to act as nurse and change dressings and flush out the tube on a weekly basis, but hopefully it will remain in place for the next few months.
Because the tumour cells are rapidly dividing they are giving me agressive treatment. So, I will be having 6 cycles of chemotherapy- administered once every 3 weeks for 18 weeks, followed by 6 weeks recovery, surgery (at the moment looks to be a mastectomy, but may be more conservative if there is a radical shrinking of the tumour during the chemo), then I will have 6 weeks further recovery before radiotherapy, and longterm hormone therapy. Urghh!

Chemotherapy will start this thursday.