1/3 of the way through....

11 sessions down- and skin still looks the same, so for that I am grateful! It is a little pink and warm, but no different than on day 2, so I am pleased so far.
I am still slapping on loads of cream, and preparing for the worst as I now enter week 3.
The most challenging aspect of the treatment so far is being advised not to wear perfume, deodorant or a bra until 2 weeks after radiotherapy has finished. Yuk!
So, just as my hair, eyebrows and eyelashes are returning and I am starting to feel a little better about myself- I am now resigned to wearing sacks to disguise my lack of underwear!! And feeling a little smelly round the edges!
Deep joy!!

Hmmm

Today I went down for number 2 out of 30, and my skin has already turned pink and is slightly warm. I look as if I have just been on a sunbed session!
Apparently this is not supposed to happen, and I may have exceptionally sensitive skin. I didn't particularly think I did, but I guess the chemo may have made me more susceptible to trauma. Anyhow, this does not bode well for the next few weeks, as the burn dies not usually happen until half way through. Aarghhh- could be in for a painful time.

Seriously trendy now...

I went to Weston Park hospital on wednesday for the planning session and now have three tattoos! I wish I could say they were out of angry rebellion, or a burning desire to be indelibly marked, but they are just the size of pinheads and help in the daily lining up and positioning of my body before radiotherapy. And they were surprisingly painless- which was cool!
The actual going in to the hospital was more traumatic than the session itself- I guess the smells and atmosphere just brought the whole experience back to the forefront of my mind. I had tried hard to get it all to the back!!!
So, today I go down for the first of 30 sessions, which apparently will feel no different to having an x-ray taken, though I have been warned of severe sunburn skin reactions, with cracking, peeling and blistering included for good measure. The skin changes don't appear for the first 3 weeks, and then build up in intensity and are actually worse once the treatment is over.
There is seemingly no end to the fun involved on this journey!

Radiotherapy

I have received my appointments through for the final phase of treatment.
I go down on wednesday for a planning session- another CT scan and some tattoos !!
And then treatment starts on monday 13th. I will go every day (mon-fri) for 6 weeks, and my final day will be friday 21st November.
I feel great at the moment, and my hair and eyelashes are starting to come back. I can hardly believe I have to endure another bout of therapy, as I want to be getting on with life now, and not bound into 31 more trips to the hospital!
But, I am grateful that the doctors are still doing all that they can to prevent a recurrence of my cancer, and I am plotting a trip away to look froward to when all is finally finished.

Hi Seroma

Have been getting a fluid build up around the wound site which has been pretty uncomfortable and made moving my arm around really awkward. On wednesday the nurse aspirated the fluid off, but this morning I ended up going back into hospital for some more to be drained off. Apparently this can happen up to six times and then they will involve the surgeon again.......urghh!
It is a sign that my body is trying to heal the wound by sending fluid to the site- but as I have no lymph nodes I am unable to absorb the fluid myself, and it builds up into a large, hard swelling which they call a seroma. It feels much better to be rid of it, despite having a large needle inserted into the incision line and seeing a huge, frothy gush of cream filling a bottle.
I rather hoped they could have combined it with a bit of liposuction...

Star dazzle exciting news!!

Emily chose the title for this posting!!
Went to the surgeon today for the pathology report.
They got the whole cancer out, and although it was surrounded by some DCIS (a different type of cancer) there was still 10mm of clear margins all around, which is fantastic, and means they don't have to go back in for more!
Also the remaining nodes were completely clear of disease, so the spread was limited to traces in one node sampled in the first surgery.
Tonight we will be drinking champagne and celebrating.
Two massive hurdles over, and only the radiotherapy left......

Eyebrow drama- not very highbrow...

Well, last week my eyebrows decided to wave goodbye, which was a bit bizarre as they had faithfully stuck by me and, although thinner, were doing a great job of giving my face a bit of definition. I seemed to come out of the anaesthetic to discover a desertion had occurred- there was an inky smudge where they used to be, and about eight straggly hairs on each side.
I lamented, and concentrated on arm exercises as, I have discovered, there is always a body part worse off than an other.
Today however they have come back with a vengeance- astounding! It is a truly unbelievable rate of growth. I don't suppose we have any idea how fast hair grows in its normal cycle, so this is quite an interesting event!! I am excited that the actual lack of eyebrows lasted less than a week!
What is also amazing are the things which now excite me- oh, how my life has changed over the last six months!!!

Home again

Today I was released properly.
I had my drain out this morning, and I am also without my PICC line for the first time since April- which feels amazing! Of course I still cannot have a shower as I now have dressings and steristrips all over me- but hopefully tomorrow I can languish under the hose!
It was quite a humbling experience being washed by the nurse on Sunday- I felt very very old indeed as I hobbled into the disabled cubicle with a tube and bottle attached to my side, and was rubbed down with wet cloths! Hopefully the only way is up from here on......
Turns out I cannot drive for 3 weeks which will be quite disabling, and I have had 2 rounds of physio with some amazingly painful exercises-which I have to do three times a day for at least a year!! I thought she was going to say 6weeks or similar, so was quite shocked by the length of time required, but apparently the radiotherapy can cause everything to tighten up and so I need to keep as mobile as possible in the shoulder joint.
So far, the wound looks amazing- I was expecting to be much more disfigured, but maybe there is a lot of swelling making it look pretty normal.
My pathology results are out next week- wed 17th, so I will know the next stage soon.

Allowed out for good behaviour!!

Surgery went well on Thursday and I was remarkably relaxed which was great. The anaesthetist tried to use my PICC line to send me to sleep, but it was dripping through too slowly for him, so he resorted to a mask. After a few 'what are you going to dream about?' comments, he asked if I was still with him. I opened my eyes wide and nodded- leading him to ask the nurse to turn on the gas!!!
I am quite bruised and sore- unsurprisingly, and have a drain in my wound which drips into a little bottle which I have to carry round with me. I can only be allowed out when the fluid is less than 50ml in a day- today was 120!!
However, they have allowed me out this afternoon for an hour or two- which is great. The kids want to see me, but are bored by sitting in the hospital room, so this is a real blessing- I can sit amongst the squabbling!!
The surgeon is 'reasonably hopeful' that she has got all the tumour. It didn't sound terribly positive, but apparently is actually a confident statement in her books! She thinks there is less than 10% chance of having to have more surgery- I shall find out in about 10 days time when the pathologist has written his report.

Farewell dear bath!

Surgery is looming on thursday and I go in tomorrow for an anti clotting injection and to sign all the consent forms.
Last week I had my counselling session which was quite informative, if not a little depressing!
It seems that when my lymph nodes have all been removed I will have to take special care of my right arm to try and prevent infection and prevent lymphoedema (an unpleasant swelling of the arm which would require me permanently wearing a compression bandage from my wrist to armpit- to be avoided at all costs I would think!)

So, I must -
invest in a long oven glove which goes up to my elbow- to prevent burns,
always wear washing up gloves and gardening gloves- to prevent cuts,
avoid saunas, hot tubs and hot baths- as they pump blood to the extremities and cause oozing in the lymph system,
rub cream in every day with an upward motion- to stimulate circulation and drainage,
wear insect repellent- to avoid bites
tell wasps and bees to sting the other arm- they can be encouraged to comply apparently!
and, above all, try not to be paranoid!!

The sad thing is that it is for ever, as obviously my lymph nodes will not be coming back!
I shall really miss my bath, so have had my final one tonight- lots of luscious bubbles, and the water so hot that I came out like a lobster...........
I suppose it is a small price to pay if the alternative is having an arm like a prize marrow!

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!