Op Chop & Onward

13 February 2012- The Day before the Op...

Well it's the day before the Op, stress levels are high but mainly under control. More a bit later as I update you since the last blog.

Firstly 3 days ago I learnt that a good friend has just be diagnosed  and will be undergoing a lumpectomy this week followed by radiotherapy. Her outlook is very serene and calm which eased my tensions when we chatted. She knows but I wish her all the best and look forward to celebrating the end of our journeys which could be around the same time.

So what has happened.

I had a lovely January mainly because I had the skiing trip to look forward to and I only had a brief meeting with Cheryl my breast nurse in the month. So could recover from last chemo and have a "normal" month.

Softies and Other Boobs

My meeting with Cheryl was to chat through any concerns about the Op and to chat through prostheses etc. Because I have this irrational fear of the operation, again I think because I have never had one. Cheryl advised that she will aim to have me early up the list for the Op so that I don't have to wait around - suits me. Turns out I am second on the list so that is great.

She passed across a softie - this is a sponge breast(complete with nipple). It is quite bizarre and I am sure some of you could consider other uses for these- any thoughts?

You are given this to wear initially while the Op wound heals. I was also told to bring in a soft bra(no under wiring initially) so I have a soft sports bra to use to start with.

As things heal I will then be measured for a gel boob. These are sized as our existing boobs and ladies who have a double mastectomy can choose any size they want.

The gel boob is a bit like an implant and are quite heavy. They sit inside your bra - either a bra specific for the purpose or you can just sew in a fabric wallet to existing bras which I will do to contain the gel boob.

There are 2 things that I can see that need to be considered and worked around. Firstly half of my cleavage will have gone- can half a cleavage go? So need to look at tops that aren't too low or wear the usual vest tops under lower tops.

Also because the gel boob isn't attached to me as my left over boob is when  I lean forward this could move forward - interesting to see how this is handled(I don't mean by hands!). So my aim has to be movement minimisation and worse of all complete fall out!

Later on once  things have settled I can have a gel boob that you glue on  daily so you get over the free movement..

So my thoughts are I am going to go with whatever Gel boob is best and  see how I feel about this for a while before even exploring a reconstruction. I may or may not be bothered by losing a boob. I haven't been bothered up to date but I think that is because my main concern is the Op.

I have had so may kind and comforting words and emails about the Op and do know it will be okay. Its just an irrational fear that will pass. All will be over this time tomorrow after all.

One thought is that as I have a reasonable boob size I could look to lose some weight - say get down to a size 10 and that would reduce size of my boob- but not really sure how likely that will be. I am going to get my fitness levels back up - started on the skiing holiday and will see what is achievable or whether I even need to consider this.

There are lots of choices - colours sizes etc. I understand the NHS supply all these initially but Cheryl also passed over a catalogue of underwear and swimwear which also offers lots of gel boobs in various materials etc. I can update more once I am fully kitted out.

A "Normal" Month

So back to January. Austria skiing was wonderful. Loads of snow and my fitness levels were better than anticipated. I only let Don carry my skis twice and we skied as we would have done before daily.

I didn't get to hear that snowflake that I understood baldies could do! Maybe its because I'm not a natural baldie! Also used Sarah or a hat so didn't get my head out while outside.

Whilst I opted to take Sarah rather than Wiggie Wig to introduce to Austria she didn't get up the mountain. I skied as usual with a helmet and wore a beanie hat underneath. Just tried to take care in the restaurants when taking off helmet that hat didn't come off- failed a couple of times.

Tropical moments were not an issue up the mountain or while skiing as kept me warm.

So would strongly recommend if you can taking time out between treatments as a) is fun and b) good for us.

Charity event at Jolly Jacks

The other fun event that took place in January was the Charity auction and meal for the benefit of the Primrose Foundation at Jolly Jacks restaurant and bar in Plymouth. The Primrose Foundation raises funds for the Primrose breast cancer ward at Derriford. Jolly Jacks is owned and run by the lovely Sue and Sal and I would recommend any visitors to Plymouth to pop in and have a meal , they're based out of Mayflower Marina and food and ambiance are just great.

Jollys have a monthly JUGS(Just us Girls) event and the charity event was brilliantly attended by approx 60 of us. We were served a great meal by Butlers in the buff. Our table was the top auction bidding table. I got the Wimbledon tickets - yea and a group of us bid and won the bidding for a sailing holiday in Greece in October... The night raised nearly £4000 and was a great success.

I sold the girls sailing trip to Don as instead of the usual girls ski trip I have had to pass on this year. So another carrot to look forward later in the year. We had our first sailing trip meeting last week so all underway. 8 of us off to enjoy sailing around the Greek islands on a luxury yacht - fantastic. Team colours agreed as turquoise , team name still to be decided..

Hair Update...

I have obviously been far too optimistic in thinking  that I would be measuring my hair regrowth by now. Its just over 6 weeks since my last chemo and no obvious signs of hair regrowth on my head. In certain light I can see 1 blond hair approx 1 cm long but its too fine to use as a comb over.

Coupled with that I have lost my lower eyelashes on my left eye so  the chemo is obviously still doing its stuff or has a delayed action on the hair follicles. I can cover up loss of eyelashes with makeup so not that obvious.

So hair measuring delayed until hair actually starts growing. Thanks to John my hairdresser - Utopia in Plymouth for the products he dropped in which thicken and encourage hair growth. Have tried a couple of times but again think a little early as no hair to thicken. Looking forward to my lovely mop of curly red hair due to arrive soon.

On the wig front have adopted using Sarah more now. Looks better when worn correctly ie parting to side not the centre! Rewarded Sarah with a trip to Austria.

Back to medical stuff as we move into February..

Had pre op appointment at Derriford and was warned this can take between 2 - 4 hours! This is my first pre_Op so was a little nervous but wasn't too bad. The following took place

1. Height  and weight measured

2. Lower legs measured length and width for bespoke Nora batty tights to be worn during Op.

3. Blood pressure taken - high- surprise surprise!

4. Chat with nurse - run through questionnaire - retakes blood pressure - still high. Yes am anxious

5. Nurse decides to do ECG to check high blood pressure not an issue. ECG confirms I have a heart ie not heartless. She asks me to relax during ECG so try and visualise a nice tropical beach, as I visualise me walking into the sea a shark appears! Think that probably shows the frame of mind I am in.

6. Nurse confirms the blood results prior to my last chemo were all good but still have 2 lots of blood taken 2nd an hour after the first.

7. Then swabbed for MRSA - usual nose and mouth swabs. Was surprised when nurse asked me to stand in corner and drop my tights! She then went on to swab my groin( apparently better than your underarm as we use deodorant under our arms)!

All finished after a couple of hours but also learnt the following about the Op lead up procedure:

1. I have to arrive at 7.30am along with everyone else having an op that day. So if your Op is at 4pm there is a long wait.

2. Change into gown, Nora Batty tights slippers and dressing gown

3.Chat with surgeon and consent forms ( I have already done consent forms)

4. Chat with anaesthetist- happy drug given prior to be taken for Op.

So my plan. Arrive 7.30am, change, quick chat - have happy drugs then don't care. Wake up Go home. SIMPLES

On that note I'll update you on what actually happens on my next blog. I have my appointment with the Oncologist on 12 March to sort out Radiotherapy and Tamoxifen and answer questions. I will also be looking to sort tropical moments at the same time.

Thank you for all the thinking of you words, cards, emails & texts etc they are all really appreciated and a tonic. You make going through this far easier.

2011 Draws to a Close and The Chemo Cycle Ends

Firstly happy Christmas and wishing you all a happy HEALTHY and wonderful 2012. You have all been amazing in your support and encouraging the positiveness that I asked for and needed that it feels frankly lovely to be sitting here writing this blog update having had the final chemo.

So an update as ever from the last blog...

Had 2 chemo cycles falling in December the last fell on 22 Dec which meant that Christmas was spent recuperating. But feeling smug and don't care as

a) got Christmas shopping done - still came up with pressies that I hoped recipients liked even with my chemical brain

b) my chemo chicks did best ever chemo input on the last one - Cannula in in one and girls so keen to get their last minute shopping done all was over in 2 hours- thanks girls

c) Last injection given by Don on 23rd Dec- thanks Don I never did like having it and I know you didn't like giving it

d) On final 10 day course of HUGE antibiotics to take me through my final vulnerable to infection period. This does take me through to end of the first week in Jan 2012 which means that we are missing the cartoon themed New Year fancy dress party that I was planning to make some amazing costumes for So have fun one and all and we'll enjoy some quiet bubbles at home content in the knowledge that you are all having fun and we can look forward to 2012 free of chemo and all the other drugs- well apart from those needed for the Op and the radiotherapy - but more of that a bit later.

So yes I do feel good, relieved, anxious of the next phase but mainly Soooooooooooo happy that the longest and as I am told the worst phase on the way to recovery is over and I got through it fine.( Well Don got the tears mainly for you lot I was fine!)

My oncologist in my last chemo clinic did seem genuinely surprised I had worked through the treatment. In fact said he hadn't come across anyone recently who had worked through the treatment as the chemo is a strong one. I took that as a pat on the back, proverbial gold star which confirms I am a strong bird.( Possibly also because I have my own business but I feel I would have worked as an employee also).

The one thing I would share as has been said to me "I don't think I could have dealt with it as well as you". Well I would probably be saying the same thing if it was a friend going through it and not me But do you know we can go through this crap and deal with it and move forward.

So moving forward to Stages 2 and 3 of the Treatment

On 30 November had meeting with surgeon and breast nurse to discuss options and the way forward. Really there wasn't any choice as a mastectomy with lymph node removal is the recommendation and the route that will be taken ( there was discussion about a radical inclusion(I think that's the term!) but on the basis it would leave little of the breast and I was advised it would not help if I chose a reconstruction later) So 14 Feb - Valentines Day is the day of my Op Chop.

Positively the surgeon was happy to fit in surgery to give me a couple of extra weeks in Jan so we have been able to fit in a weeks  skiing - so looking forward to it.

I do have a couple of appointments fixed prior to the Op - In January a meeting with Cheryl the breast nurse to learn about new stuff - like softies which I will update on in my next Blog.

Also pre op appointment in Feb which I understand will take around 4 hours and is lots of tests as usual prior to an Op.

Being completely honest having never had an operation I find the thought really scary. The surgeon advises I have the easy part as as the "Op is a breeze" I am knocked out and wake up after the Op which takes approx 1 1/2 hours and all is done. But as I am nervous of the anticipation Cheryl my breast nurse will try and get me in in the morning slot so I can just arrive and be knocked out. So will push for this.

So a few facts learned about the operation

1. My surgeon advises he gets SAD so is off to South Africa back just before the op. On basis he might be a) jet lagged and b) still affected by sad I feel I will be writing on my right boob "This One" and on the left " Not this one" just to play safe.

2. As mentioned the op only takes 1 1/2 hours - such a short time to have an impact! The mastectomy itself is straight forward it is the lumpectomy which goes into the underarm and over the shoulder that is more complicated. As a result there will be a drain required and I am advised that there may be numbness in my arm and stiffness in my shoulder to deal with.

3. If all goes well I may only need 1 or 2 days in hospital and with exercises should be able to be driving after 2 weeks. So fingers crossed.

4. Consent form signed....

Then that means that Stage 2 of treatment finishes early in March.

At my final Chemo Clinic with the oncologist the first Radiotherapy clinic is set for 12th March. This will fix the date of the first radiotherapy which will run daily for 3 weeks. So whilst we haven't discussed the effects of radiotherapy talking with others this can just make you a little sore and tired. So my plan is to fix my appointments first or last thing so I can have on way to work or on the way home. At which stage I understand that I will then start on a 5 year course of Tamoxifen. So treatments then finished in April. I'll come back to more on these after the Op and when I know more.

So my understanding of the treatments is the following:

1. CHEMOTHERAPY - this treats the whole body. Mainly because even with all the scans there is always the concern that there may be a rogue cell that doesn't show up and chemo will remove these. In my case having the chemo first was also to reduce the size of the tumour so that when they remove they can take some surrounding good tissue off also - ie the aim is to remove all tumour cells. My TAC chemo was given in 6 lots of cycles every 3 weeks. This took me from end July 2011 when lump found to now Dec 11 when finished.

2.OP CHOP - objective is to physically remove the lump and the cancerous cells- so specific.

3. RADIOTHERAPY - again this is a localised treatment directed at the area of where the lump was and is received daily over 3 weeks.

4. TAMOXIFEN - pills needed to be taken over 5 years as I was found to be Oestrogen receptive - ie tumour cells grow faster(I think!) if Oestrogen in the body and this stops Oestrogen production.

So the longest more arduous treatment is over and the remaining 2 phases seem quicker and I am advised are easier to recover from. I will again at this stage mention that each case is different and we all respond differently to the treatments so I will try and remember not to plan too far ahead and take each stage one at a time.

Also I have met some lovely people having my chemo and want to wish them all well. Some of them are going through intensive weekly chemo and make what I am going through seem less significant - I wish you and your loved ones well.

Side Effects & Hair Regrowth

Okay I am going to move into 2012 and my hair will start to regrow as the chemo leaves my system later in January.  I am looking forward to having my hair back although I haven't found being a bald bird too bad- probably because I have always know it would grow back. So a few thoughts on this

1. I am gong to need to allow extra time for styling again when it is back - no more shake and add!

2. I will need to visit hairdressers again - not choose either Wiggie Wig or Sarah. Can't have hair bleached for 6 months as hair follicles delicate so will be using temporary hair colour to achieve desired effect.

3. I thought I would have one of those markers on the wall like they have to measure kids heights to record my hair growth.

4. Having a wig is convenient with these bloody hot flushes as I can whip off until I cool down - see later on this.

5. Looking forward to glorious thick and glossy new locks.

6. Wigs become a choice not a necessity ie dressing up not normal day to day stuff - great.

7. I will I feel be less defined by this - something that I have found hard to deal with

And finally heard recently that bald people can hear a snowflake. So I aim to hear a snowflake before my hair is back- so love that thought.


Right over to side effects...the tropical hot moments and considering reconstruction

I have been lucky through the chemo and the side effects have been manageable and bearable. But the worse thing now(not whilst in chemo) is the fact that the chemo has moved my body into menopause. So after 4th chemo my periods ended - so great but then the hot flushes started- so not nice. Yin and Yang...

The oncologist advised that these are more severe than normal as the Oestrogen production has been stopped suddenly in my body rather than gradually if nature took its course. Taking Tamoxifen also ensures this continues.

For me this means that I can be just relaxing and suddenly I feel that I am in a tropical hot place with no shade to shelter in and without the lovely sand and sea to enjoy. Its bizarre and I know the likelihood is that lots of us girls experience this as we move into menopause. I am not willing to accept this without doing something to ease it. I also find that I tend to wake up around 2am again in that hot tropical place.

So I am going to investigate what I can do to help this. The usual courses of treatment - HRT, plant oestrogen etc are not available to me as I can't have any oestrogen triggers. I will drop into Mustard Tree as I am sure they will have information on this. I think diet might help as can sense for example that coffee seems to be a trigger so thought I would monitor to see what else seems to be a trigger. My oncologist did say there was something they could give me that we will chat through at radiotherapy clinic but if I am honest if I can deal with without any more drugs I will. But if not and it helps might go for it. So again I'll let you know more when I do. If you have any suggestions all gratefully received.


One area that I need to explore later is a potential reconstruction but you may not be aware like me untilnow that there are implications here that can have a lquality of life impact. As I am having radiotherapy after the Op  any reconstruction has to be later anyway. But and this is a big but for me as my surgeon advised you get out of a reconstruction what you put into it - a bit like life I thought. What he meant was the following:

1. I could have a quick implant. So one quick boob job, and one normal boob - not a natural look I feel. or

2.  They could construct a boob taking muscle from back or stomach which looks much more natural. However there are potential life quality impacts. If muscle is taken from the back this can weaken the arm and could mean I couldn't play tennis or ski - so not what I would choose. If from stomach weakens that area.

Anyway the discussion on reconstruction was only initial. Given my thoughts on operations I may not go for it anyway. But who knows how I'll feel after the Op Chop. After all my first thought was that I wouldn't have a wig but I did so watch this space. It is a womans perogative to chage her mind.

So you may be able to tell I am feeling pretty chipper as chemo has finished and I can ignore Op until February.

I am looking forward to a "normal" January without hospital visits and a weeks skiing.

I'll update when I have some more news or information.

In the meantime thanks again for all your positive vibes and good wishes they have really helped. So lets all have a wonderful, healthy, fun and prosperous 2012.

The Good The Bad and The Ugly

Firstly an update.....

It's been some time since my last blog mainly because I have find myself short on time so I thought I would change tack and look to doing shorter and maybe more frequent blogs. Then it doesn't take me as long and those of you asking how things are and looking forward to the blog update are catered for.

So I've had the 4th chemo - only 2 to go...More reveals in the good , the bad and the ugly below.

Friday 14 Oct unexpected scan appointment for a liver ultra sound arrives...really don't like the unexpected as you can't help worrying.

Mon 17 Oct clinic appointment at Derriford. This time with my chemotherapy consultant who introduces me to a trainee doctor (doesn't seem old enough) but he has a nice way and covers all the usual questions on how I have been how have the side effects been etc. he confirms that the CT scan came back clear but showed a shadow on my liver they want to check. This confirms the liver ultrasound appointment I received unexpectedly. He confirms they think it is benign and not a secondary but want to check(again until this is proven this is a worry!)

Chemotherapy consultant back and does a manual check on my lymph nodes and checks boob - includes tape measure check on lump. Feedback great in that lymph nodes back to normal and tape measure test shows lump reduction 2cm or so.. this will be supported by a further MRI scan to check change in lump.

Trainee doctor boy then redoes same boob tests under guidance of consultant - how times change as now letting a "stranger" touch my boobs at my age!

I did say at the end of the last blog that I would look into communication between those in wellville and us in Tumour town. As this is a wider subject and I don't want to upset anyone I'll tackle this in a later blog.

So here goes...

The Good

• Time is flying so that I have chemo 5 of 6 next Thursday and the final chemo just before Christmas then chemo finished.
• The diagnosed Haemangeoma on my liver is common and benign and needs no treatment. So scan results all in and I've passed.- well done me.
• Hospital phobea completely gone.
• Got a friend for Wiggie Wig - called her Sarah(you know who you are) - my blond number.
• Had a fun time at the MacMillan Look Good Feel Great afternoon- recommended for any of you going through this. Shared Wiggie Wig around and met some lovely people and got some great free make up and tips.
• I am fully fuctioning a week after chemo - working hard and trying to fit in exercise time in the 2 weeks before next chemo - walking and cycling as spending a good week sedentry which so isn't me! (Don't want a lardy arse- its so easy to lose fitness and takes longer to get it back).
• I have been advised by several ladies  that chemo is the worst of the treatments to be faced and nearly over now.
• I have an appointment fixed with the surgeon next week to learn what they are proposing and why. Lots of qustions ready to be asked etc. This also will I hope sort out my treatment diary so I'll know if we can fix in a week away skiing if I have an extra week before the op in January/Feb as would like that carrot to look forward to.
• Will  be enjoying Christmas a week later than you lot as will be recouperating but then looking forward to moving into 2012 with chemo behind me.
• Spending the later part of recouperation time being creative while brain power resumes. I gage my recovery on how quickly I can complete a difficult Sudoko. In "normal" times I can do one in minutes as I recover it starts by taking a day until about day 4 when back to normal. I call this my "sudoko chemo brain test".

The Bad

• Last chemo it took an hour for the lovely chemo nurses to get the cannula in my hand - had to change to right hand in the end so that chemo could start. I am just taking it in my stride but it is making it harder to get my head in a positive place immediately leading up to the chermo day which is not surprising really.
• The injection I have the day after the chemo is something I don't look forward to as a) I hate needles b) it stings and 3) it makes me feel crap on Saturday- achey and flu like as it makes joints - neck, back legs etc ache as it makes the bone marrow produce blood cells. I did learn that each injection costs £640 but again as I know the side effects go it is easier to get through.
• More queasyness building with each treatment but again popping the antisickness pills work - just need more and need to take earlier.
• The chemo after the 4th time does seem to have hit my hormones. I am having lots of "hot" times and finding I am unexpectedly tearful especially if anyone is nice to me. I have no control over this and find it a bit unnurving as I don't usually blub so much. In hot times I wip off Wiggie Wig and pop back on when passed. Can see that from a temperature viewpoint I am "lucky" to be having chemo in Autumn / winter as might overheat in the summer.
• Doctors are way worse that nurses at putting in cannulas. There seems to be a pecking order. I had bad brusing from cannula in arm for second MRI scan but it was nothing compared to the 2 doctors doing the ecosound of the liver! No problem at all when blood taken by the blood extraction nurses. Currently bruise free..
• Worried about the next treatment - The Op as never had one. So need to chat to surgeon, breast nurse etc to feel positive about this. Any positive advice gratefully received.
• Frankly bored at having to consider keeping away from communal areas and avoiding infection. This just really means avoiding people. I am in the office working during days 10-14 my apparant vulnerable time but would work from home if anyone in the office poorly. Not been to cinema, theatre or gatherings for months so again will be overdosing in 2012 to catch up. As well as holidays & travel.
• Soooo looking forward to not being defined by this and back to being me.

The Ugly

This is where I upload the photos of friends and family trying on Wiggie Wig which shows to us wig wearers that if you don't take time to consider your wig placement you can just look wierd!

So stick with me on this one and I'll upload some photos anon.

Next blog will be in a couple of weeks with updates from my appointment with the surgeon etc.

Getting to Know Wiggie Wig

Catch Up

Well time flies and I have had second chemo on Friday 30th September and no real new scary experiences to relate although I had "forgotten" that I don't feel great all the time so was reminded.

 Felt rubbish on the Sunday and wobbly until Saturday - a day or so longer than after the first treatment. I also needed 3 days of additional anti sickness pills that I didn't need after first chemo but the pills worked so just took as needed.

So looking back into the third week of the first chemo cycle and feeling really well and Indian summer arriving.

The Monday of the third week of the cycle is the appointment with the consultant. So arrive at Derriford a little nervous with Don in toe as concerned about the scan results.

Straight into see registrar who I've not seen before and a general chat on side effects(or positive lack of) since the chemo and just generally how I've been feeling. She confirms that we will continue onto second chemo on Friday and advises that an appointment will be set up with the surgeon after the third cycle as a decision will then be made whether to continue with a further three chemo cycles or whether to move straight to op. Having only had one chemo I can feel/see a difference so in my mind it seems to be having a significant effect. Registrar advises that chemo can have a drastic effect on the lump but I hear the surgeon and chemo consultant warning in my ear that whilst the objective of the chemo is to shrink the lump they still think it will be a mastectomy not a lumpectomy. I am still in chemo mode and as know what is involved happily dealing with it. On change to op mode I will I am sure move back into that wanting to run away mode as frankly never had and don't want an operation.

Nothing forthcoming on scan results.. what I was concerned about so ask. She chases through and confirms bone scan in and is clear - phew. Other scans will take time for results- hay ho.

Working as normal and discovered I can stick hair to my head by keeping up in a ponytail although hair is felting up so realise I am going to need to take action soon.- see later.

Drop into Derriford for blood test on Wednesday on way to work- managed it on a free 45 minute parking ticket too. Then decide to have a fun pre chemo day on Thursday and enjoy the glorious weather.

So Don and I put bikes in car and cycle the camel trail from Wadebridge to Padstow - 10 miles return have lovely lunch and pint in Padstow and walk out to the beach. A lovely day and as you can tell feeling great.

So Friday and chemo appointment at Derriford at 9.30am so leave at 8.30 to get there in time. Don comes this time - George my sister was there for the first but it is something I am happy to have on my own as just takes time and doesn't hurt.

At Derriford they give you the first chemo in a room on your own and I had asked on Monday if any chance of second chemo in a "private" room but they have 5 newbies so have chemo in communal room but not too bad.

My Chemo Treatment and how I get it: The Medical bit..

I am receiving the TAC Chemo treatment which bizarrely is given as ACT as below. From memory Nottingham uni came up with protocols that define the recommended chemo programme which is defined by the type of tumour cells they establish by the biopsies and the size and grade of the growth. The amount of chemo is defined by your square meterage which they determine by measuring your height and taking your weight. Obviously this is my layman's understanding picked up as I have gone along so may not be a) complete or b) fully accurate.

So receiving the chemo treatment starts with a cannula being attached to left hand and over the next 2 hours the following liquids are introduced

Strong anti sickness stuff dripped in then:

Saline solution dripped in along with the A and C drugs of the chemo TAC treatment

1. Doxorubicin(previously known as Adriamycian)= A. This is a given by way of 2 large syringes into the cannula tube by a chatty chemo nurse. The fluid is red and causes a shocking red initial pee! Takes 20 mins approx.

2. Cyclophosphamide = C- a colourless liquid again 2 large syringes as in 1. above introduced by nursie again takes 20 mins approx.

3. Taxotere = T-given by way of a drip via the cannula and takes approximately 1 hour. This is one of the 2 of the 3 that guarantees hair loss.

In between do have temperature and blood pressure tests by chemo nursie and treatment ends with rest of saline solution.

After 2 hours that's it all done. All liquid onboard and don't feel anything just have sympathy bandage on left hand from where cannula removed which can be taken off after 20 minutes but gets sympathy if left on for longer. Its one of those things that could be covered with a small plaster but whole hand and wrist bandaged.

Effect of chemo don't seem to be felt until approx 2 days later and some of the effects may come from the subcutaneous injection day after chemo(means they inject into the fatty bit of your tummy - obviously difficult to find on a washboard stomach like mine!) This injection from memory encourages the production of blood cells in the bone marrow as the TAC system can reduce the number of white blood cells produced in the bone marrow so you are vulnerable to infection particularly in days 10-14 after treatment which is why it is important to stay away from communal gatherings and ill bods in that time. An infection could mean a hospital stay to treat so don't be insulted if I shake hands rather that the usual kiss hello- its not personal my immune system is currently unreliable.

Moving on and let me introduce you to Wiggie Wig & my lack of hair

At time of writing I am bald as a coot and have introduced Wiggie Wig to the South West.

How this happened:

• Exactly 2 weeks as advised on Friday 23rd Sept my hair was noticeable easily removed.
• I counteracted this by keeping hair in pig tails although noticed I replaced doodling while on the phone with pulling out my hair!
• It felt quite pleasant to pull out although I limited any drastic removal to avoid obvious bald spots. Obviously this was personal taste otherwise known as vanity!
• Did you know that the NHS give you a £100 voucher towards a wig - no well the only downside is to benefit you need to be having chemo.
• Fix appointment with Browns the wig people at Mustard Tree on Thursday 22nd Sept. Head really wasn't in it because a) not losing hair then and b)the wigs they showed didn't make me happy. Decide to fix an appointment at their salon the next day as recognise might need a wig by that weekend.
• Chat with John my hairdresser - he is happy to trim and style wig and recommends going for a longer one so it can be cut to a couple of styles and lengths
• On Friday at salon try on a few and opt for Becs a mid length choppy number darker than my original hair with flickie bits and highlights - nothing too drastic. This is Wiggie Wig a man made wig that lasts up to 6 months. I will let you know more about Wiggie Wig anon.
• I am holding out for third chemo as if chemo stops after 3 treatments then hair will start to grow back a few weeks later If I am to continue on with a further 3 treatments then I will then treat myself to a real hair wig. Wiggie Wig only has a life of 6 months whereas a real hair wig will last a few years if looked after.
• Wiggie Wig is very easy just "shake and add"- stays in style. I have added slide to fringe as not used to so much hair at fringe level.
• A real hair wig needs treating like hair ie washing and styling so not as easy but in my mind is much nicer.
• Thought about taking shots of Wiggie Wig at different venues - her first visit was to Tesco - nobody pointed or laughed but I bottled it as was going to pop her on a Tesco post and take a picture.
• I will add a piccie of with and without Wiggie Wig so you can judge.
• Surprising pleased with bald head - quite small and smooth when could have been weird shape or lumpy.

So how I became bald- I blame the drugs.

It was obvious that I needed to do something with the felt mat previously known as my hair on the Monday 3rd Oct after my second chemo. The sun was still shining so I sat outside and cut/ pulled off my hair to achieve that tufty look I was trying to avoid. From then a gentle tugging removed much more - but still tufted.

Then a very pleasant way to enjoy the sunshine Don wet shaved my head while  I sat outside.

That was it I was now a baldie (but it will grow back after chemo ends).

Added extra eye makeup and lippie and didn't think the bald me was too bad.

So the positives:

1. Saving on shampoo and conditioner

2. Opportunity to tan head - it is very white - did add a little fake tan to tone down

3. "Shake and add" Wiggie Wig saves approx 1/2 hour as no need to wash and dry.

4. Wiggie Wig if worn correctly hides bald head from Joe public.

5. Wiggie Wig stays on up to a force 5 - I haven't tested in stronger winds yet! Will report anon.

A word of warning though it is true that the sun ages your skin. I have a few lines on my forehead but my head is as smooth as anything. Also; I need to check Wiggie Wig before going out as it is possible to wear at a weird jaunty angle that frankly looks stupid. I am sure that in such instances more people look at me so I am saying hello to more people than normal!

To those of you who see me out in such circumstances - please do take me to one side and let me know.

Also to those of you shocked if I whip off Wiggie Wig to share the baldie - sorry if it shocks you but I am quite enjoying the reaction.

Well its the Monday of the second week after chemo 10th Oct and feeling back to nearly normal- although bald. I get a week and a half  of normality before moving into 3rd chemo which will be a day earlier as I can have at Liskeard hospital which is only 10 minutes rather than an hour away. Also Don now trained to do subcutaneous injection ( I can take any number of injections and cannula's by not looking - can't do myself as likely to pass out!)the day after chemo so don't have to hang around for district nurse So efficiencies kicking in.

After third chemo then have to have another MRI to measure chemo impact and see surgeon to determine whether stop then and move to op or continue for 3 more cycles. Once I know that can plan if getting friends for Wiggie Wig or not needed.

Last but not least..Aim for 100 followers

On a final note in case you don't realise it I am a competitive bod. I know several of you are following this blog but haven't registered as followers. My aim is to get to 100 followers - well a girl has to have a plan. So please do register and please do share with with others to help me achieve this.

Thanks until next time...when I think my title will be "Social interaction from Tumourtown and the people of Wellville" which I have blatantly stolen from an article by Christopher Hitchens in an article in December 2010 Vanity Fair I read while waiting for my MRI.

The start of week 2 after first Chemo Cycle & Other ramblings

Well its 12 days after first chemo and feeling amazingly well. I'll share the side effects a little later but really I have got off lightly so far and life carries on as before- I don't look or feel ill- long may it continue.

There have been a few different scans which I'll go into in more detail as this is all new and nothing like "House" on TV.

In the meantime I thought I would share my top 10 that have helped me up until now, thought I would revisit this list in due course:

My Top 10

1. A hug from Don when needed - ahhhhh!!! The soppy bit
2. Sunshine, wind and the sea- I am an outside girl after all.
3. You lot - thanks for all your amazing support and positive vibes
4. A good book - just read The Radleys by Matt Haig- a jolly yarn about vampires with a twist- very apt with the amount of blood I have had extracted with each hospital visit. This was top pick on Channel 4 book club which is why I chose it as wouldn't have normally but was an enjoyable read.
5. Music - current motivational song - Tubthumping - I get knocked down but I get up again - by Chumbawamba - for obvious reasons. Gets my toes tapping and makes me smile - try it.
6. Knackered Cow candle from Cowshed for relaxing. Smells lovely and is relaxing.
7. Neales Yarde invigorating bubble bath - does what it says on the tin.
8.  A sprig of lavender from the garden. Took with my to hospital in early days -  a sniff helped to relax during those stressful waiting times.
9. Doing this blog. Gives me a little control.
10. iPad - for those early evenings when I couldn't sleep catching up on Mad Men and iplaying anything interesting on TV to pass the night etc.


So my Chemo cycle is every 3 weeks and I am on day 12 after the first cycle - which is week 2 of 3 and feeling frankly great. I had so many conversations with consultants and nurses about the possible side effects  and whilst I am aware that the side effects after each cycle can be different so far not too bad. To anyone else who is going through this and having bad side effects I am sorry but really grateful that I have got off lightly so far. In reality I felt nearly back to "normal" by the Friday after (7 days after) first Chemo although energy levels a bit lower, before that legs a bit wobbly so just went with the flow and made sure I did a little light exercise each day

My Cycle 1 side effects and how I am dealing with them:

1. Taste buds changed as tongue cells not replaced making food taste bland. Bizarre to be hungry and eat and be disappointed as the taste isn't there to enjoy. For example I can't taste tomatoes now and cheese tastes bland just a texture! So I found that if I add salt & vinegar crisps to a cheese & tomato sandwich it tastes ok. As food in general tastes bland I have invested in some spicing up ingredients including Levi Roots Reggae reggae sauce, sliced jalapeno peppers, English mustard etc. The hotter the better tastes good.

I am currently experimenting with unusual ingredients to get the best taste mix - any suggestions gratefully received.

2.  I day woke up queasy- dealt with it by eating a banana.

3.  I am told I will lose my hair this week - not yet fallen out so watch this space. Curious to know if it will be a sudden shed or gradual and what it will feel like.

4.  3 days not able to sleep. A side effect of steroids taken over 3 days from day before through to day after chemo treatment to counteract possible allergic reaction to chemo. Just had to catch up on sleep once steroids finished.

5. First few days really thirsty - drank water.

That really is it. I have pages of notes on possible side effects from the light to the really heavy which I won't go into now. I'll update you if later Chemo cycles mean different side effects.


So in the meantime I have had a few hospital visits for various scans which the consultant booked in for me. I hadn't really given any thought to these and how they work until I went for them so I thought I would share what was involved:

Scans

1. The CT Scan
This was a 7pm appointment. It started with being given 1.5 litres of white gloupy liquid to drink over 45 minutes. It looked like thick milk and smelt like oranges. It was Barium solution to show up your innards - lovely.

Into the scan room, stay fully clothed and lie on a comfy "bed" on my back with my arms above my head. Cannula in arm to have dye added. 2 Nurses settled me in then vacated room. The scanner is a circular narrow "disc" with a hole through which either the bed moves into or the scanner moves over the bed- had my eyes closed so not sure which.

It was very quick 2 trial runs as you move into the scanner an American recorded voice says "breathe in and hold" then after a few seconds says "breathe".

Then nurse says right going to pump in the dye into my arm - remotely. Then says oh bye the way Jacqui this might make you feel that you have wet yourself - don't worry you won't have!. A really strange feeling - but in case you wondered no I didn't wet myself but it did feel like I did!

All over in 10 minutes. The male nurse had just started his shift - was on until 8am. He advised normally does one of these CT scans every 20 minutes but the most he has done in a shift was 50 on a really busy day...

I can confirm that 1.5 litres of Barium solution doesn't fill you up and Don & I collected a Chinese take away on the way home( a hot one of course).

2.  The MRI Scan

This is to measure lump accurately and will be redone after 3 Chemo cycles to see if Chemo working on the lump.

Arrived at a new part of Derriford hospital at 10am along from maternity and cardiology for the MRI which is  a security protected area to enter. All clean and well decorated. Joining instructions suggested bring along a Cd to listen to as scan will take up to 1/2 hour so I thought it would be a quiet relaxing experience - of course it isn't!

For this scan you put on a  nice turquoise cotton gown( opening at front) with a matching turquoise dressing gown. Cd - Nina Simone taken from my car last minute passed to Jessica the radiologist. She added a cannula to my arm (getting used to this) as dye would be added in due course- she stays in her room - glass screen overlooking the scanner and a lovely nurse settled me in. This time  I needed to lie on my front. The bed was a bit like when you go to have a massage and there is the hole in the bed to rest your head, except in this case there were two holes for my boobs - aah dignity... So this time lie on your front with arms above head and the scanner is the "tube" the whole body moves into with little spare room around. Nursie gave me earplugs then passed me through scanner ie bed moves into scanner to connect cannula to dye tube then vacated the room. Nina Simone Cd started all relaxing then Jessica spoke. Okay Jacqui are you comfy- yes then we'll start first scan - it'll take 4.5 minutes. Then the scan started- couldn't hear Nina Simone - the scan sounded like a machine gun going off even with ear plugs in. After this scan a few seconds on Nina then Jessica advised next scan would take 6 minutes - this time the noise was like the beeping you get as a lorry reverses amplified. Jessica advised final scan would again be 6 minutes and this time scan noise was a mixture of the first two with the dye also added.

So all finished and collected back Nina Simone Cd- why they suggest a Cd I really don't know as you hardly hear any of it? Cannula kindly left in my arm as 11.30am and off to Nuclear medicine for my bone scan.

3.  The Bone Scan

I knew that I was going to have a radioactive solution injected(hence cannula left in from MRI scan) and then 1.5 hours later at 2pm have the scan. So am radioactive - apparently no side effects and no impact on others. But they give you a code for the Nuclear medicine loo and ask you to use it.. The point on side effects and impact and a separate loo doesn't add up in my mind.

Anyway as needed to top up car parking decided to pop to local pub for lunch and enjoyed  a white wine spritzer and the book I am currently reading. Felt a bit like being on holiday.

Back to Nuclear medicine for 2pm and the scan. This time dressed and lying on your back but nice nursie wrapped a cover over me so that my arms couldn't move, put a pillow under my knees and an elastic band around my feet to keep them together. This time the scanner is two squares each a couple of feet square. Nursie kindly put on radio 4 and I quickly lose myself in the Archers followed by the afternoon play. Scan just involved the flat screens moving to about an inch from your head and moving around your head then that being repeated at various points down your body ending at your feet. Think I nodded off.

So left home at 9am to get to Derriford for MRI at 10am followed by bone scan and got home just after 4pm. Lying down being scanned is tiring or maybe the MRI noise and radioactive injection make you tired Either way was knackered so flopped that evening.

So up until last week I had no idea how the various scans operated and now I am an "expert" so I hope you found my summary helpful.

I can plan ahead a little now as I know I have the rest of this week with nothing else that needs doing and as mentioned I feel good. The course of antibiotics taken over 10 days finishes tomorrow and I am drug free apart from iron tablets until chemo 2 on Friday at the end of week 3 next week.

 Talking about the antibiotics they are huge 3/4" and I did have one of those OMG moments a day into taking them as I had ignored the leaflet so I wouldn't be on notice of any side effects. But then it occurred to me that maybe they shouldn't be taken orally - phew on checking they were!

Week 3 is meant to be the week you feel best in the cycle but also involves a few visits to Derriford. Monday is the visit to chat with the consultant, Wednesday visit for blood test to make sure ready for chemo which is on Friday. Other than that feeling great and time flies.

Again please do share this blog and feedback your thoughts. Do you want more or less medical stuff or personal stuff etc?

The start of a journey

A bit of background...

Found lump end July 2011, saw doctor, referred to hospital, weeks holiday and  treatment started 8 September.

The aim of this blog is to share with you my roller coaster to cure and the highs and lows along the way. It is a selfish way of me sharing with you how things are. I can then control the communication and you don't have to ask so this doesn't need to be in my mind 24/7 and also lets me learn how to blog.


Those of you who know me know I will take a postive outlook. The one thing I have learnt in the short time since this has started is that I have to take one day at a time and therefore can't plan - this is a new skill I am going to have to learn.

From the start this is something that has to be faced and dealt with, no running away. I am now a drain on the NHS service and they have really stepped up to the mark. I will be putting something back into the system to repay them in due course - will advise when I have an inspirational idea.

So this is me someone who previously didn't do drugs only took the odd headache pill and alcohol to me now a walking pharmacy.

I'll give you the projected course of treatment but this may be a moving line as follows:

1.  Chemotherapy every 3 weeks- over 18 weeks ( a review after 9 weeks to see if continue or move to op)

2.  1 months recouperation- looking forward to this

3.   Operation

4.  8 weeks recovery

5.  3 weeks radio therapy and hormone treatment

6.   May 2012 finished...


Before I started this blog I sent out a couple of update emails and repeat them below as they help to bring everything up to date.

.....Well stress gone as now know what is going to happen. Bit of a stress yesterday for Don- said I was very brave as thought I would meltdown- but I was just relieved to not have to go straight in for an op and lump grade not as bad as I had set it up to be. We went to pub.

 

Have a lovely timeline starting in Sept ending in May 2012 when I am going to enjoy the following treatments - Chemo(18 weeks), op, 8 weeks recoup, radiotherapy and hormone treatment somewhere in there too.

 

Whilst it is a shame that you can be made to feel ill with the treatment side effects to get better there are some positives>>

 

1.    Cheryl my lovely breast nurse advises that there is evidence to show that people who drink respond better to Chemo- my notes wrote - drink more!

 

2.    Whilst no skiing this season- saw the best theatre ever last night - Kneehigh Theatre - The Wild Bride at Asylum down at St Agnes last night. Always love what they do and Asylum restarts July next year so will be post timeline then.

 

3.    Might not need to shave..

 

4.    If lose hair often grows back curly - fancy a curly mop.

 

5.    After Op no heavy work - includes cleaning , ironing etc- shame. So might just write that book I have been planning.

 

6.    Seems like loads of ladies who have been through this end up by feeling the positive change in outlook is life enhancing.

 

7.    Having our own business have flexibility to work from home as needed- Have found it good to stay busy.

 

Obviously I am realistic to realise that might not feel 100% through this but as Danny Baker said on Desert Island discs your body is the battle ground so you just have to let it get on with it. Feels easier as different treatment stages so if one crap know it will end.

 

Have a weeks window of opportunity to get away next week before first Oncology appointment on 7 Sept so looking at a last minute week away. 

 

....My diary is a bit floating at the minute as starting to build relationships with different departments at Derriford. e.g just moved bone scan appointment With Nuclear Medicine fixed today from Friday 16th to the following Monday. With first Chemo tomorrow( I need to see what happens and how I am so a little reticent to fix up stuff at the moment. Nursie said more people have minimal side effects now but when I said so I can take part in a tennis tournament on Sunday she said no she didn't think I would be up for it... so all a bit unknown at the moment.

 

Chemo - now officially smoothing treatment- because I needed a positive slant on this! Was a bit OMG I'm going to be poisoned tomorrow which is too negative so having left Derriford laughing when the nursie final word to me was see you Friday for your poisoning after advising that I may not have many side effects feeling a bit better in my head.

 

Calling it my smoothing treatment because a guarantee that one of the 3 treatments will guarantee hair loss so will get a smooth head and aim is to smooth/reduce my lump. I was advised that will lose all hair potentially so no shaving for a while & never dared to bare before so might like it!

 

I would appreciate your ideas on head hair loss as can see a few options- I understand that after 2nd smoothing treatment will start to lose all in clumps:(since advised will lose hair after 2 weeks)

 

• Bring back the comb over as a retro statement after all 70s is so now!
• Go tufty - have cut short first
• Let it go its own course
• Try a wig - have an offer from a friend whose been through this of an £800 Eastern European Wig- quite fancy trying a sharp bob like Uma Thurman in Pulp Fiction!
• Retain hair and make home made wig!

Aesthetically at the moment I don't care about this its only temporary but it lets the outside world see what is happening which I don't like being defined by.

 

I thought I would treat myself to a couple of gorgeous hats and scarf's to aim for trendy head wear until my glorious red curly mop grows (well I can dream!) So keep on smiling and let me know your thoughts on my head hair.

 

 

Before I continue I do need to say a big thank you to family and friends for all the lovely support and for taking on board my request for positiveness etc. You all have been a great help.

 

So on Thursday 8th Sept started a 3 day course of steroids- suddenly couldn't sleep- unexpected side effect

 

Friday 9th Sept - Few hours in Derriford Oncology ward - 1 hour chatting through all the potential side effects- mainly from the supporting drug regieme and the third conversation on this. Actual treatment fine - I don't (sorry didn't) do injections as a rule but painless and just tired because of lack of sleep caused by the steroids. 3am catching up on The Madmen series... Have come away with strong anti sickness pills to take alongside steroids.

 

Sat 10th Sept - feel ok just tired, no sickness and only the odd ache and pain in joints. District nurse called in to give an injection to help boost immune system which is weakened by the treatment.

 

Sun 11th Sept - no additional drugs to take for 2 days... Slightly queasy but didn't need back up anti sickness drugs and Don took me for a spin in car in sunshine to enjoy wind in my hair(still attached to my head). Was able to have a couple of hours sleep in afternoon too which all helps with having your head in the right place.

 

Mon 12th Sept - tired because high winds kept me awake but again an additional drug free day. Worked from home.

 

So to today have started a course of antibiotics - huge pills (ignored the reams of paper listing out the side effects). Had a good nights sleep - feeling good so doing this blog and then working.

 

In overview the chemo which is a 3 drug treatment stop cells dividing at different stages. Healthy cells can recover from this which is why hair comes back but in the meantime the immune system needs support to prevent infection. My system won't be able to deal with any infection without support which may include hospitalisation - not an option I am going for. So in the first week after chemo they give you drugs to help this and recommend that I avoid communal situations like cinema, theatre, etc etc.

 

 

I will blog at random when there is anything interesting to share. Please do feel free to interact, share the blog with others etc. We all I am sure know people who have been through this- the statsitics are so scarily high but the results are good and it does help to share.

 

Another scan appointment letter drops on the mat- unexpected and tomorrow night - hay ho.