Noj's blog

Music Music

2010-03-24T14:45:55Z

Music has really helped me through some of the tougher days.

One of the things I have done is recorded some songs for my mum and my kids - not wishing to sound doomy and gloomy but I always figured it would be something for them to remember me by.... not that I'm planning to shuffle off any time soon!

Anyway - last time I recorded a song that I want played at my funeral. It made for quite an emotional recording session but I'm glad I did it.

I thought some of you might be interested to hear the results and so have attached a link here:

http://www.reverbnation.com/noramorrissey

Since doing this, someone has suggested I record some more - soft celtic type songs... so if any of you have any suggestions for me - please let me know.

Noj x

Feeling a lot better and making some progress with my dissertation....

2010-03-10T11:39:20Z

Hi all, I am finally feeling a bit more like my old self and am trying very hard to make some progress with my dissertation. Some of you will already know that I am trying to find a way to make Ports more easilly available on the NHS after having such a difficult time trying to get my own and knowing what an enormous difference having one has made to my life.

Please read the rest of this post to see if there is any way that sharing your experiences might be able to help me achieve that goal. - THANKS!

When I was told that my veins were no good and I would need 'a line', I really didn't know what that meant. At my next visit, having done some research, I told the doctor I wanted a Port rather than a PICC line. He told me that it was not an option unless I went private or to a hospital with private funding that meant they could afford to do it for me. To cut a long story short - I did not accept the decision, I pursued it within the Surrey PCT and eventually I was given my Port. I was told that the reason they gave it to me was because they were able to justify the cost based on the expected length of my treatment.

At the time this was going on I was preparing to write a dissertation as part of my MBA. When the chemo nurses told me they would like more people to be given the option of a port without having to fight for it, I said I would make this the topic of my dissertation. It makes sense to me that if there is a point at which a port becomes cost effective then it should be a standard policy that those patients meeting the criteria are offered on.

I have subsequently learnt quite a lot about ports and I'm continuing to learn about policy decision making within the NHS. For example I have discovered that there is no national policy not to give ports on the NHS (as I was first told). I have also been told that the Marsden (who do use ports) don't manage to do it because of special funding. I have been told that the Surrey PCT does not have a policy not to give ports - in fact they have no policy relating to ports at all. The information I have been given is that it is the decision of the clinician. If the clinician says yes, then it will be funded. This is totally at odds with the experience I had and so I am now on a quest to find out if the clinicians have a policy on when they will deem a port to be appropriate.

I know that there are limited funds within the NHS but I also know that in certain circumstances, giving a patient a port would SAVE the NHS money.

One way to overcome the postcode (or clinician) lottery is to have NICE render a judgement on when it would be appropriate for Ports to be offered. The NICE decision would then become a national standard (I'm checking to see if they have already done this in the hope that the issue is one of policy deployment).

As I said - this is all going to form part of my dissertation which when finished I will offer to the PCT and NICE for consideration.

To do this properly - I need some help. I need to write a couple of case studies of people who have tried to get a port. I can use my details but I really need a second case study in order to demonstrate the lack of consistency in the process. Ideally, I would like to use details of someone who has been unsuccessful, in order to bring the differences into sharp focus. It would be ideal if the request was made of the Surrey PCT but if NICE has already rendered a judgement then that may not be an issue. It would also be helpful to find someone who was offered a port on the NHS without having to fight for it. Can you help? I promise that I will anonomise the case studies so that your identity will not be known from what I have written (as this is important to me too). Please let me know if you would be willing to join in with this.

In addition to case studies I will be developing some questionaires to gain insight into the issues associated with PICCS and PORTS in an effort to make the impact that the treatment type has on us count for something too. If you can help with that, please let me know so that I can then let you know when I have the questionaires ready.

If I am successful in this work it will mean that more people will be able to have Ports fitted without experiencing long delays and lots of red tape. It will mean that fewer people will have to find a way to fund this privately - because that extra expence is something that many of us just cannot afford.

Please help me if you can.

Many thanks,

Noj x

Starting to feel normal again

2010-03-01T09:07:46Z

This time last year I was just preparing for my second op - it was needed to acheive a wide margin and to hopefully close the gap in my wound which had been leaking serous fluid since my first op a month before. I was also trying to get my head around the need for chemo and radio as follow in treatments. I really had no idea what the journey ahead would be like. There were lots of silent tears in bed at night and in the morning....

But here I am.... almost 14 months after diagnosis and whilst I'm still taking painkillers, I have another 10 Herceptin treatments to go (and muga scans of course) and 5 - 10 years of tamoxifen ahead.... I am starting to feel normal again.

My finger and toe nails have almost all grown back (two still need some time before they will look normal). My hair is extremely short but still seems to be growing. Chemo brain has almost left me and my energy seems to be returning slowly but surely (except for the day after the Herceptin treatment).

I am starting to crack on with my dissertation (which despite several attempts was largely put aside for the last 9 months) and I've started looking for work (as savings are running low).

To top it all - a mamogram that I had a few weeks ago (the first since my diagnosis) came back with no evidence of cancer. Woohoo!!!!

Life is good.... or at least I feel like it is going to be good again.

Noj x

The 5th Herceptin... or maybe not...

2010-01-14T10:11:23Z

Muga scan results are in and it doesn’t look good. Muga results are fine as long as they are within normal range and within a 20% drop of the baseline result. So... what is a baseline result? Well, I would have thought it would be the first result – mine was about 56%. My second result, just before the Herceptin started, was about 74 or 78%... quite an increase! My last result was 51%. So it is less than a 20% different from the first result but more than 20% different from the second result. When I was told about the criteria I asked which set of results would be used as a baseline and the answer was ‘don’t know’.

I was due to have my latest oncology appointment yesterday and my Herceptin today. Neither has happened as I’m still snowed in! I have just talked this through with the hospital and I’m going to attempt to dig the car out and get there as early as possible tomorrow in the hope of having a blood test, oncology appointment (and trying to convince them I’m ok), then get them to mix the Herceptin and finally, get the treatment. I’m expecting to be there for a full day!

Keep your fingers crossed for me!

Noj x

The 4th Herceptin... if I make it!

2009-12-24T06:04:15Z

It's Christmas Eve babe... (Opening line to fairytale in New York) ....

I'm delighted to say I'm not in the drunk tank! Yes it is Christmas eve morning at 6am. I'm sitting in my nice warm living room, the tree lights are on, the house is quiet and I'm contemplating both the last week and the week ahead.

Last week I took a road trip with my mother. We went as far as Meigle in Perthshire by way of North Yorkshire with Glasgow and Preston on the way back. We were incredibly lucky in that we visited with lots of lovely people some of whom I had not seen since I was a teenager.... It was great. We also had great luck with the weather. Snow fell in the south after we left and the roads, whilst cold (-5 in places) were fairly safe and clear. We arrived home around 6pm on Saturday before the worst of the weather hit ...well... everywhere!

I have a bit of a cold which has driven me to take cold remedies rather than my co-codamol. This has been an interesting change, I had an upset stomach for the first day but I'm managing to tolerate the pain. Having been on the co-codamol since September, I'm rather glad to be taking a break from it. There have been too many articles about 'addiction' to painkillers for me not to have been concerned. I have probably been a little irritable over the last few days but I feel it is a small price to pay when going cold turkey! Every cloud has a silver lining.

Talking of turkey - we usually have goose at Christmas but this year we are going to cook turkey and I am rather looking forward to it. We have bought a rolled breast joint so have no fear of a large turkey carcass feeling like a presence in the kitchen, outstaying it's welcome. I will be boiling the ham today, finishing it off with a nice mustard and sugar coating and using the left over stock to make a yummy ham and split pea soup for lunch.

The weather report says it is 0 degrees outside, freezing rain is forecast with a low of -1 and a high of 5. The road outside my house is like a sheet of ice. My Herceptin appointment is at 9am and the hospital is a 30 minute drive away (in good weather with moderate traffic). So I'm expecting a bit of an adventure this morning!

I'm having a Lemsip now in the hope I'll be feeling ok when I eventually get there. I'm being optimistic and allowing 1 hour for the journey. I suspect the pharmacy won't make up the treatment until I arrive - due to the weather and the expense - so I'm also expecting that the rumored 30 minute treatment will probably take an 1.5 - 2.5 hours to complete if I'm lucky. Last time I waited an hour for them to start and then it took an hour to deliver! Fingers crossed it will all go quickly. Last time part of the problem was accessing my port. This time I think I will take a directing role in how they attempt it as I'm already too tender to want multiple stabs!

Other than that.... My eyelashes are back - they are short but they are definitely there! My head hair is now looking fairly dark, and whilst there are 3 areas that are not as densely packed as the rest, it looks like it is getting thicker. I'm estimating that I might be able to have it shaped into a short style by Easter!

I have 4 finger nails that are still my own. They all look like they should have fallen off but I think they will hang in there and hopefully stay attached until the new healthy nail is fully grown. I have had false tips put onto all the other fingers for the sake of appearance - useful for interviews and when visit relatives and friends that don't know about this health stuff! One fell off on the drive home on Saturday - perfect timing really - and that nail is now not far off fully grown. I have been taking a combination supplement from Boots to help promote growth... perhaps that is helping!

My feet and hands are still a bit numb ... but I realised this morning that I no longer have the dreadful dry skin that plagued me for so long... Isn't it great how quickly we manage to forget the bad stuff - the appetite and taste problems, the streaming eyes and nose, the terrible pain, the fear of the operations, the misery of sharing the news, the terror of the initial diagnosis.. Thankfully it really requires some effort to remember how dark some of those days were.

I have been out of work this year having been made redundant just weeks before my diagnosis. I sometimes feel that I have wasted having a year off and beat myself up about it. But then I remember... I have passed my MBA exams, and whilst my dissertation is still outstanding, I have a plan in place to get it done. I have spent a lot more time with my kids than I could have had I been in work, I have managed to keep this illness from them so there has been no air of fear in the house. All has been relatively normal. I even managed to get a few songs recorded for my Christmas gift to my mum and a few close friends (thanks to Pepper - the most wonderful engineer and producer ever!!!). I have also had 3 operations, 6 chemo sessions, 20 radio sessions, recovered from 2 post surgery problems, the radio burn is almost gone, The chemo pain is receding, I'm on Herceptin number 4 out of 18 and I should only have 3 or 4 mugga scans to go. Admittedly I have not started taking my tamoxifen yet but think I will start it very soon. I keep having one reason or another to not start but I'm reaching the point where I want to get on with it and think the need outweighs my concerns.. so I'll pick a day very soon and take my chances with the side effects.

All in all, whilst it isn't the year off I would have wished for, it has not been wasted. Perhaps this was something I had to experience and in fact it may have been perfect timing. In many many ways I still have lots to be thankful for.

So all that remains is to wish you all a very very merry Christmas and a happy and healthy New Year.

Now.... where is that de-icer..????

Lots of love to you and yours -

Noj xxx

Just call me Robin....

2009-11-15T15:28:07Z

I've been mentally segmenting my treatment into phases -

1: Diagnosis, 2: Surgeries, 3: Chemo therapy, 4: Radio therapy, 5: Herceptin, 6: Tamoxifen, 7: Remission.

The first 3 phases are complete.

Phase 4: I have had 16 of my 20 Radio therapy sessions and as the blog title suggests - I now have a red very breast (‘tis the season). It is sore but I'm delighted to say the skin has not yet 'broken down' as was the fear having gone for the larger fractionations over a shorter time period. The RT treatments will finish next Thursday but I'm told the skin will continue to react for another 2 weeks. Fingers crossed (seems to be their perpetual state) there will be no further deterioration.... however if there is, they tell me there is another cream they can give me for that. With a little luck, all will be well by Christmas.

Phase 5: I had my second Herceptin treatment last week. It took just over an hour. I’m told the remainder (16 treatments between now and 14 October 2010 if all goes well – not that I’m counting) will only take 30 minutes each.

Phase 6: I should have started my Tamoxifen on the 17 October but didn’t because I wanted to be free of the chemo and steroid side effects first. My doctor assures me that it is highly unlikely that I will experience more pain as a result of the Tamoxifen – but I am still a little reluctant. I am continuing to take co-codamol and another pain killer – stronger than the Ibuprofen but I can’t recall the name – and I am still feeling pain every day. I cannot tell you how annoying it is! As the Tamoxifen treatment will go on for at least 5 and maybe 10 years I think it is safe to say this is more of a marathon than a sprint and I’m hoping that a one month (or so) delay won’t kill me!

From the Docetaxel, I have now lost my thumb and index finger nails on my right hand and my left thumb nail is only just about holding on at one edge. The good news is that while they were preparing to fall off the nail started to grow underneath so that when they finally came off they were already ¾ of the way back – woohoo! They are ugly but it is reassuring to know that when the others eventually go (and they all look like they will) there is a good chance that they will all come back in a reasonable amount of time. My feet are still numb in places and my toes and toe nails are rather sore but no doubt this will also resolve with time.

The return of my hair (including eyelashes and eyebrows) seems quite slow. The hair on my head is sparse and most of it looks almost transparent. I was told by another person that had been through this, that she also initially had what looked like ‘fibre optic’ hair but eventually it reverted to how it had been before. Well you can imagine – if it were really fibre optic hair where you can flip a switch and have the ends glow in different colours – maybe even a flashing light function – how exciting and cool would that be!!!!! I’d never want normal hair again..... but apparently that is not the case so I am remaining calm.

Phase 7: My understanding is that to be in remission you need to be clear for 5 years – so in my mind – this is only a matter of time! (PMA – Positive mental attitude all the way!)

I’ve planned a 5 day road trip with my mother in December (15- 19) so I am determined to be feeling well by then. Providing we don’t kill each other I’ll post another update on the final results of the radio when I get back.

Best wishes,

Noj x

Radio 5

2009-10-30T15:34:27Z

Hello all.

I've just had my 5th radio session. I should have been on number 7 but the machine was broken for 2 days. No obvious side effects so far (beyond a slight tenderness).

The one thing that has been a problem is that my legs or more accurately, my thighs stopped working properly a couple of weeks ago. I found that I was suddenly struggling to walk up stairs because of the difficulty in my foot reaching each step – in fact walking in general is a bit of an issue. I spoke to a doc who has said this is a side effect of the steroids taken during chemo - what a nightmare. For the first time since all this began I now feel disabled! He says it will get better with time but no indication just how much time will be required....

I also continue to be in pain - enough that I need pain killers every day. Not sure if this is a chemo or steroid issue but I'm hoping it goes away soon.

Other than that - my feet are still semi-numb, my right hand thumb nail has all but fallen off and the rest of them are in pretty bad shape. Any suggestions on how best to deal with this?

That's all for now folks...

Noj xxx

It is all go again....

2009-10-13T18:24:34Z

Hi all,

Just a quick update.

I've now had two measuring sessions for the Radiotherapy planning - I think they know my boobs better than me now!

I've now had 2 'debates' with the Radiotherapy Registrar:

The first one was about the duration of the treatment. I decided to push back against his 'change of heart' (that seemed to be driven by a change of boss Dr) and I am sticking with the shorter regime. This gives me a chance of being ok (from a radio side effects perspective) by Christmas.

The second was about the side effect of another cancer resulting from the treatment. At an occurrence rate 1-2 per 1000 I think it is worth discussing.... but he was reluctant - maintaining that it was a small number and not worth worrying about. Easy for him to say!!!! All I wanted to know is how the cancer tends to present itself... bone, breast, lung, skin... well eventually he said none of those but as a sarcoma... which didn't really shed any light for me at all. So more research required I think.

Anyway, my mugga scans have come back with a better result than last time - no idea why, and I've got them to agree to start my Herceptin on the same day as the Radio - which is now scheduled for next Wednesday - woohoo!!! I'll also start my tamoxifen at the same time so it will be a big day and feels like another milestone achieved.

I'm booked in for a recording session tomorrow - so I'm intending to have a fun day out. Just finalising all my preparations now.

I'll let you know how next week goes.

Bye for now.

Noj x

Radiotherapy Planning Session Questions

2009-10-03T09:00:24Z

When I had my first discussion about Radiotherapy I was told that at my hospital there are two schools of thought on the impact of different time cycles. One Doc likes to use a shorter cycle whilst the other prefers a longer cycle. I had gone in thinking that a longer cycle could be gentler on the body but was unsure of whether in fact it just means that it takes longer to do the same amount of good and damage. When questioning the oncologist he told me that 2 large international studies had shown that the detrimental side effects of the treatment were no worse for the higher dose / shorter period. This information helped me to decide to opt for the shorter cycle.

I was delighted when I was told that my Radiotherapy registrar said I could be done over 4 weeks instead of 8. Apart from this reducing the daily visits to the hospital it also meant that I'd be feeling good by Christmas.

Yesterday I had my planning session and the same registrar suggested that I rethink and go for a slightly longer period of 6 weeks instead of 4. He said that because I have large breasts, to extend the treatment would minimise the risk of skin irritation. Obviously I challenged him on this based on our previous conversation. He then revealed that I had been allocated to the Dr who prefers the longer cycle.

By the time I left I had opted for the longer cycle on the basis that it is easier to cancell appointments than to make them but I was hoping that I would get some advice from people who have gone through this.

I asked if there was any way to predict whether or not you were likely to suffer with the skin irritation and he said if you tend to burn in the sun then you are more likely to have a problem. Well.... despite being dark haired (when I have hair - lol!) I have freckley fair skin and burn quite quickly.

I'm going to look for the research that I was told about but I'm also hoping your replies might give me information will help me decide to eaither keep the appointments that have been made or cancel a few in favour of the shorter period.

So.... can anyone tell me - what kind of skin you have (from a tanning perspective) and how did your skin react with the radiotherapy treatment and what period did you have your treatment over?

Thanks,

Noj x

The last TAX - woohoo!

2009-10-01T10:49:40Z

I’m a bit late getting this update out – so sorry about that.

The final chemo treatment went without incident although several people came and went in the room and I heard many horror stories relating to veins and PICCs etc so it was a bit distressing but good encouragement for me for my dissertation work.

I was also able to pick up my first prescription for Tamoxifen that I will be starting on the 19^th October. It appears to be 1 tablet per day for 5 – 10 years .... but obviously I’m starting with a 1 month supply!

The following day I collected my Mum from the airport and in search for some privacy, took her out to dinner in a lovely quiet pub with the intention of talking her through my last few months.... well.... the conversation just didn’t seem to go that way.

The next day, Emmet (my youngest son) stayed home from school – the doctor declared he may have a viral or bacterial chest infection and prescribed steroids and antibiotics, saying if it got worse we may need to take him to the hospital. The poor wee mite!

Again, in search of a quiet place and time to have ‘that chat’, I took mum out while I arranged to have a piece of carpet whipped (don’t ask!). While that was being done we popped into a local garden centre for a light lunch. Well.... I had avoided putting on any make up that morning, knowing that my lack of eyebrows would be a give-away. I was just steering the conversation towards my wig thinking it would lead talk about my general appearance when mum asked me if I had shaved my eyebrows. And that was it. I got a little tearful as I told her the whole story but she was absolutely fine with it all. She had not had any thoughts that anything was wrong until she had seen my eyebrows that morning and she became suspicious. It turns out that my Grandmother had a lumpectomy in her early 80s. She had radiotherapy (but no chemo) and was taking Tamoxifen for a few years as well. Suprise suprise, Granny also kept this to herself and mum only found out when reviewing Granny’s meds shortly before she died. This ‘not telling people so they won’t worry’ seems to run in the family!

So, this last treatment has been horrible in its impact. The painkillers are not killing all the pain, my taste buds have deteriorated further – even coffee isn’t nice now and everything I eat makes me feel sick, the numbness in my hands and feet is more severe and seems to be extending and I swear that my lips are starting to feel funny. There are days when ‘chemo brain’ plays havoc with my head and whilst I know what I want to say, finding the right words is near impossible. Having mum here has been lovely but she really has not seen me at my best! I can’t wait for this to be over... and am delighted that there is no more chemo on the horizon.

On Tuesday it was my 19^th wedding anniversary and mum thought she would be babysitting while hubby and I went out for a meal. Instead, she is cooked a curry from my childhood in the hope it might tickle my taste buds. I managed a few mouthfulls before I started to feel sick which was a few more than everything else I have tried so I was a happy girl! Mum left yesterday and I was very sad to see her go but I think she will come back around Christmas which should be great.

I have my Radiotherapy simulation appointment on Friday afternoon so that I’m ready for the treatment to start 2 weeks later. Bring it on!!!!

I’m hoping that I will get my energy back next week as I’m hoping to have my first recording session of the year in October - I’ll need to start singing whilst beavering away on my dissertation !!! I'm hoping the time pressure will help me focus on my research - I have about 5 weeks to get this done now! Please keep an eye out for the surveys I'll be posting. I'm hoping the data I collect will help convince the NHS to make Portacaths more readily available to those that need and want them.

TTFN

Noj x

Oncologist Update and session 5 (tax 2)

2009-09-01T18:56:11Z

Hello all, Here is my regular 3 weekly update. I had my meeting with the oncologist last Friday to discuss the next stage of my treatment. Fact sheets included below if you are interested. I should be getting an invite to plan my Radiotherapy some time over the next 2 weeks. My understanding from others is that it involves being wrapped in cling film and getting tattoos....! well - whatever turns you on I guess! I also enquired about the radio treatment duration because I've heard you can have a higher dose over a shorter period which doesn't sound good from a side effect perspective but I'm told that two large international studies have shown no adverse effect. So... being the brave soul I am I opted for the shorter version (read - one who likes to take the easier version!) so I should be having 4 weeks instead of 8 weeks which as it is a daily visit will be much more manageable. The other good news is that providing the visit goes to plan, I should start Radio 3 weeks after the last chemo which is a little sooner than I expected so I'm very happy with that. There are as ever some side effects. Apparently I'm lucky that my right hand side is being treated as it means my heart is unlikely to be zapped. My right lung and ribs will not be so lucky. They say the lung damage may be reversible but that the rib damage and subsequent pain may be with me forever but hopefully will become tolerable over time. http://www.cancerbackup.org.uk/Treatments/Radiotherapy/Sideeffects/General At the end of the last chemo I will be starting my course of tamoxifen tablets. These will be daily for at least the next 5 years. There is some recent evidence to suggest there may be benefit to taking this for 10 years so this may be a possibility... but I guess we will review the latest data in 5 years time and make the decision then as the side effects may outweigh the benefits. http://www.cancerbackup.org.uk/Treatments/Hormonaltherapies/Individualhormonaltherapies/Tamoxifen Finally, my Herceptin treatment is also being lined up and can also start as soon as chemo finishes but I was given no clearer indication of start date than that. He did seem confident that it will start before Christmas which is great news as it will keep me on track for being free of frequent hospital visits by Christmas 2010. Herceptin may cause heart damage and so my heart will be monitored quarterly during the treatment. http://www.cancerbackup.org.uk/Cancertype/Breast/Treatment/Herceptin We then talked about the side effects I had from the Taxotere and all were normal - unpleasant and nothing he could do to help although he did suggest a mouthwash that might offer me some additional relief so I'll try to get that tomorrow. The big painkillers I got last time helped quite a lot but are contraindicated with the anti nausea tablets I have to take so I'll be on Ibuprofen for the nausea tab days and then onto the big ones when the major pain kicks in so I'm hoping the next 3 weeks will be better than the last. My fingernails seem to be suffering with sign they may either split or lift off the nail bed completely so I'll be looking for hints and tips on how to avoid that! For once my appointments actually ran to schedule and so I left before my blood results were ready. Because it was the bank holiday weekend I got an extra day of feeling ok and my treatment was scheduled for today (Tuesday) instead of the usual Monday. It turns out my blood results were good and so all went ahead without a hitch and once again the boys went off to practice their bowling skills with some signs of improvement at the end. I have my next appointment with my surgeon on the 15th September for a check up. I'm not sure if that means another mammogram or not but whatever it is, it is happening before radio starts which is a good thing due to the pain radio could cause thus making any kind of examination somewhat unpleasant. Slightly further out on the horizon... my Mother has decided to visit on the 22nd of this month! As you can imagine this will be an interesting time as I have not yet told her about all of this! If I lose my nails and if my eyebrows finally give up on me then I guess we will be having that 'caring sharing mother daughter chat' at long last. The good news I guess will be that the chemo and so hopefully the worst of it (from most people's perspectives) will be over and so hopefully she won't freak out too much! She has timed her visit to be close to youngest son's birthday (I had to make it the day after as I'll be having my last chemo on the 21st and would not be in a position to collect her from the airport that day) and Bren and my 19th wedding anniversary.... and I couldn't really tell her that I'm going to be ill that day... so we'll see how I handle that one! Whilst it is always lovely to see her... this visit just might be tricky! Finally my dissertation is going very slowly and a mahooosive kick up the arse is required so I will be trying to do that over the next few days - especially as I know my health over the next 2 - 3 weeks will be a bit touch and go! All help will be gratefully received. I hope to be approaching people to answer queationnaires soon - please watch this space! So..must crack on.... TTFN Lots of love as always, Noj x

Day 5 Tax

2009-08-14T08:21:27Z

Well.... this has been an interesting 5 days. Treatment day was a breeze and finished with me feeling quite energetic. This wasn’t just ‘not feeling tired,’ it was spontaneous motivation to scrub the bathroom. Given that I am no domestic goddess, this was as welcome as it was a surprise! Day 2 followed in a similar vein with lots of housework getting done (this time focussed in the kitchen). It felt great – I realised that had forgotten what normal felt like. I felt that I had started to flag on Day 3 – with just a small burst of wall washing achieved, which was a little disappointing. Day 4 was a different kettle of fish entirely. I woke with a strange feeling in mouth – as if my tongue was too big and my teeth had developed sharp edges. My joints – ankles, elbows, hips – you name it – started to hurt even when sat at rest. As the day progressed it hurt to walk (sore heels) and by lunchtime I discovered my sense of taste had altered. Everything tasted sweet – or so it seemed. I tested this by eating a pickled onion and found it tasted milder than a Golden Delicious apple! Nothing tastes good at all. By the evening time everything hurt and I was glad to take to my bed with a couple of painkillers inside me. I woke several times during the night to go for a wee... so at least the fluid retention is under control but getting up from bed (just the 4 times!) helped me to discover that every muscle had now joined in and it hurt to lie down as well as move. This morning the pain continues... for example I tried to split the blister packaging on the painkillers with my thumb nail to release it without crushing the tablet and found it too painful to complete – so even my nails hurt! Aaaarrghh. I’m far from impressed! However.... today is day 5 – the first day of the Ciprofloxacin tablets. I’m hoping that they will make everything feel better so that the last 24 hours becomes a minor blip. It doesn’t feel minor at the moment but I’m hoping I’ll be able to dismiss it to that extent with time.... I’m hoping that things can only get better! I’ll update you as things change. Noj x

The first tax was... not so taxing....

2009-08-10T18:19:57Z

Well it is that time of the month when I have returned from my latest chemo session and on this occasion ... there is not much to tell! My blood results were good on Friday which meant today could go ahead. The other pre-requisite was taking 3 sets of tablets (more steroids) in advance to help guard against an allergic reaction, vomiting and fluid retention. The great news is that for the first time in a treatment session the nurse managed to access the port first time - woohoo! The treatment itself took a little over two hours to complete as they do it as a very slow drip infusion to start with - the first 20ml was dripped in over 24 minutes. They gradually increased the pace over two 12 minute increments checking I still felt fine after each lot and then pushed the remainder through quite quickly. So in treatment terms it was easy peasy lemon squeezy. So... the next 3 weeks will find me keeping a diary to track which of the symptoms I experience with this new drug. I know that the 'don't mix with the humans' days start two days earlier this time ie on day 5, but given that with the FEC I actually felt cr@p from day 5 rather than day 7... we'll need to see how this one works out. With this one you have to take extra meds from day 5 onwards so they obviously expect the side effects to be more extreme... only time will tell. I'll keep you informed. Here is a reminder of the fact sheet if you are interested: http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Docetaxel In addition to monitoring my health progress I'll also be trying to make some more headway with my dissertation. I must admit it is proving quite hard to get back into the swing of it. However, I now have my chapter layout in place and have started making some progress on my research methodology but really need to forge ahead on my literature review. I think I will need to put a study buddy in place so that we can help push each other along to make sure we both make good progress. I think I know just the person to approach so a keen and cunning plan is in the making to help keep us (even though they are unaware at the moment!) on track! It is for such a good cause... I know its such a good cause so I will be re-energised!!! Promise!!! Thats all for now folks! Noj x

Third time lucky

2009-07-20T14:51:11Z

Last week when I went to have my bloods checked, the nurse who had previously accessed my port told me she would be on holiday today, so, using a marker pen she marked the correct access point on my chest so that whoever saw me today would know where to aim the needle. Well... it turns out that my port is quite mobile... and the place that had been marked was now nowhere near the right spot! So after one unsuccessful attempt.... one nurse held the port steady whilst a second nurse pushed in the needle. I cannot tell you how relieved I was to see blood! So... it was my third and final FEC and it was the first time that my Port was used for a treatment. All went without incident. Another reason I was pleased was because in the last week the area of the veins in my arm that have previously been used for treatment started to feel sore. I wasn't sure if this was related to the treatment but when I asked today they said it probably was. In the last week I have found that I have really sore eyes. I thought that it may have been because I have a bit of a cold and so have not been sleeping brilliantly but they said it was also probably a side effect.... oh well - I guess I had to get something more happening sooner or later..... My next round of treatment will be on the 10th August and I will be switching to Docetaxel (Taxotere®). I am told that due to the nature of the drug you need to start taking the anti nausea tabs the day before so that you have had 3 lots before you start. I was also told the first 2 treatments are likely to take 2 hours :o( as it is a drip style of treatment and as I have not felt too sick with FEC, I'm likely to be quite sick with this one. Oh... so much to look forward to!!! I'm not going to worry about it... I'm just going to hope that I can prove to be the exception to the rule (after all they did say if you were very sick when pregnant - which I was for 8 months of it - then you will probably be very sick with FEC - which I haven't been). Anyway.... tomorrow is another day - and it is one I'm looking forward to. I have a meeting booked in the morning to help me move forward with my dissertation (I heard another nightmare story today about a Port being requested and refused - I really hope my work will help change this dire situation!), I'm then going to see a friend for coffee and some lunch followed by a 'look good feel better' make up session back at the hospital in the afternoon. http://www.lookgoodfeelbetter.co.uk/site/index.cfm What a treat !!!!! Noj x

Any port in a storm...??? No ! We can use mine!!!!!

2009-07-07T07:54:09Z

It has now been 9 days since treatment 2. This first week turned out to be similar to the first week after the first treatment – but a little less severe. This is probably because I was ready for the various symptoms / aches and pains etc and so took whatever preventative action that I could e.g. drinking more fluids and keeping on top of eating little and often seemed to help reduce the woozy light headed feeling and taking painkillers seemed to keep the headache and aches and pains in check. I haven’t managed to crack the sleeplessness and it doesn’t seem to matter what time I take the steroids / sickness tabs so I guess I’ll just have to put up with feeling wiped out now and then. Right now it feels like a very small price to pay. The ‘woohoo’ news is that I went along to let them have another go at using my (so far) inoperable port yesterday afternoon and it worked - FIRST TIME !!!!! Big love goes out to Nurse Karolina who hopefully will manage the access going forward. I was really dreading the prospect of another operation to fix / replace it so this is fantastic news for me!!! Because of the treatments and all that go with them, a holiday is pretty much out of the question for us this summer. The boys will both be attending their usual movie making workshop and there are a few organised events locally that look like there is plenty of fun to be had close to home. So far I have something planned for all but the last two weeks between now and when they return to school in the first week of September. With a little more luck this whole episode will pass them by without notice other than that I had a mad moment and decided to shave my hair!!!! How cool will that be!!! So... whilst I still have the odd down day, I’m feeling quite optimistic about things in general. What I need to do now is get my focus back onto my studies and start looking ahead to when I’ll be able to start applying for jobs again..... oh happy day!