Follow Up Appointment

Well I am sorry it has been a while since my last blog, but I have been out and about again instead of stuck at home in front of the computer!

I went to see my consultant for my follow up appointment this week. First off the tan test...my doctor had told me I wasn't aloud to come back too brown from holiday, i passed! Then we discussed my general health, how I was feeling. Told him that I had felt fine since the last chemotherapy, no sniffles of anything and that I was gradually getting my energy levels back, this week has been really good I have been doing a lot more stuff.

Asked a few questions such as - should I go back to the dentist yet? YES as long as my latest blood results come back normal. Can I get my ear re-pierced? YES go for it. Can I go back to the gym, start horse riding again? YES go back to the gym...but why would you want to go horse riding (my consultant didn't actually say those words...but that was the impression I got!). Should I have the flu vaccine? YES if you are happy to do so.

The gist of it is that the lymphoma could come back at any time, at any point, as aggressive as before or not and it could manifest itself in the same way but it might not, there is just no telling. I basically have to be aware of my own body and any concerns I have I will communicate back to him and we will take it from there.

If all runs smoothly I wont see my doctor until February and then if he is happy, not for another 6 months and then if OK, yearly after that. My consultant was pretty laid back about whether he would scan me again or not, his general practice is to not scan again unless there is cause for concern because it creates unnecessary anxiety. I go along with this now, but may feel different in a years time.

Well it finally fells like a door has closed after Tuesday, it is not over but that part is done. As I have said previously but will say again and again, I really appreciate everyone who has been there, however big or small part I couldn't have done it without you and I THANK YOU.

Now for the next chapter - 'Getting my life back on track!'.

HOLIDAY

Totally relaxing. A few snaps.

Freedom

Went back to the hospital yesterday hopefully for the last time for a little while. I went to have my port removed. Ended up spending quite a lot of time at the hospital because I was last on the list! The actual procedure to remove it was very quick, I was in and out of theatre in half an hour. Had a small sedative to relax me! Then went into theatre, had a screen put up around my face so I couldn't see what was going on but could feel some tugging and pulling as they removed it. It didn't hurt, it is just the pressure you feel. Had to spend some time in recovery afterwards where they check your blood pressure. Had to wait in hospital for a while afterwards as I had an hour of intravenous antibiotics, to reduce the risk of any infection, a precaution because my blood count was so low. They kept checking my blood pressure too because it was so low! Finally left the hospital at around 2.30pm - hopefully won't be having to come back for a while - freedom!

Today my arm is a little sore and still pink from the anesthetic, it is bruising up nicely but all looks very neat and should heal in no time. It is nice to look down and see flat skin instead of the bump of the port.

9 days till holiday!!!

A Big Thank You

Last Thursday was the day of the tea party. I wasn't feeling on top form because of a cold I had been suffering from for over a week, but the adrenaline of the day took me through. It was a great day.

Went down to the village hall at about 11.00am and with help from some very good friend got it all ready. We got out the tables, set up the activities and decorated the hall. It looked good by the time we had finished, the hall glistening in purple and white the colours of the lymphoma association.

The tea party started at 3.00pm and it was overwhelming, the number of people that turned up and the amount of cakes and raffle prices that we were given. It was fantastic. As well as tea and cakes to try there were stalls with plants and preserves for sale, photo cards to purchase, a Celebrity Quiz, The Great British Tea Break Quiz and Guess the Weight of the cake. (If you are interested in the answers, drop me an email at hayleyb563@hotmail.com and I will send them to you!).

A BIG THANK YOU to everyone who helped make this a very special occasion and such a huge success. It was great to see so many people come and show their support. We raised over £1200 at the Tea Party and together with donations received we have collected almost £1700 for the Lymphoma Association, an unbelievable amount.

Big smiley face :0)

Great British Tea Break

If you fancy a cup of tea and a piece of homemade cake this Thursday afternoon, come along to the Hinxworth Village Hall between 3pm and 6pm, all welcome.

Done and Dusted

So countdown is over, chemotherapy is done and dusted, hopefully for ever but at least for now. All went smoothly today. Saw the consultant..it was decided to leave out Bleomycin today because I have a cold, a slight tightness in my chest and a little shortness of breath. Bleomycin can cause problems it your lungs and it is suggested that it could react with a virus in the chest. Although this is very rare, it is better to air on the side of caution and it is the least important drug out of the four in ABVD, so seeing it was my last one and I have had it 15 times my Dr decided to give me a break today! Also some very good news - I can have a take out curry in two weeks, delicious - can't wait hope it is as good as I remember! Then I guess that means I can do things like go back to the cinema, swimming, being in crowed places - football matches and or course there is all the other take aways to catch up on...and the gym too!




So know time for the reflective part. I was thinking about what to write the other night when I couldn't sleep and knew I should have written it down then and there because now I can't think!


Well I think I have passed that bit of the test - chemotherapy that is and getting into remission. There is a lot more still to come and I am sure with that some ups and downs, but lets just hope I can go up and plateau up there for a bit!


It has been a rollar coaster of emotions, feelings and just generally. 'Good' days well as good as they can be, family days, friend days, inspirational days, days I have laughed, cried, frustrated days, anxious days full of what ifs, wanting to run away days and sleepless nights although not many I am a good sleeper and have some wicked little pills if I can't!


I can't say it has been easy but it hasn't been what I would call hard. There have been difficult times, things I have had to deal with I have never thought about before but overall you just have to do it. I think that we are quite resilient as a race, we kinda of deal with whatever is thrown at us and muddle through as best we can. I couldn't let it pass that today is the 8th anniversary of September 11th...there is always someone worst off than you.


Some friends come, some friends go, some deal with it better than others and friendships grow, people you don't expect surprise you and it is a lovely feeling to know they care. Some run away, don't know what to say, hide, I understand that too, wish I could of, but a message simply saying I don't know what to say is better then none at all. Thank you to everyone who has been there, through it all, you have all amazing, made it easier and you all know who you all are - sending some of that love back at ya.


Now got to get my life back on track...but a little bit of celebration time first hey! x

A week today...

So a week today I will be hopefully sitting in the chemo chair for the very last time! To be honest it can't come quick enough, this year has been god damm long so far and not very exciting. Bored of being sensible, bored of hospitals, bored of being stuck in the house, bored of having no motivation, bored of being moody, bored of not working, bored, bored bored bored bored!

Don't expect to feel miraculously better when its all over but at least I wont have to go to the hospital every two weeks to get pumped full of drugs, and energy/motivation levels should come back and stay back instead of getting knocked back down again. Hopefully once I return from holiday then I can start to get things back to normal, go to the gym, have a curry, go to the cinema, go out to the pub propably, go away for the weekend...just some of the things on my 'To do when I feel better list!'. Its all uncharted territory though so we will have to see.

How slow/fast can a week go, we shall see.

What a Relief!

What with the delights of modern technology I had to wait a little longer for my scan results than I had expected, but I got them this morning. The results are good, the scan is 'clear' but not completely negative, the radiologist remarked that he doesn't think there is any active Hodgkin's presents...However there are always quirks! There are some areas of uptake which the radiologist referred to as 'brown fat'. Apparently some people, not many, have these active areas of brown fat which can show up on PET scans. Other indications that the cancer has gone are that there are no active areas in the lymph nodes or in the area that was a concern on the chest x-ray. My consultant also remarked that my lymph nodes had reduced in size from my last CT scan...all good signs.

I also had another bit of good news over the past few days...I entered the lymphoma association's photography competition 'Look at Life Differently' and although my photo wasn't in the top twelve entries they want to use my photograph on the back of their calender! This is it below. To see the winning entries click here.

It is funny how things happen, On Monday I changed my 'count down to last chemo' at the bottom of my page to 2 weeks, a day early! From today it really is two weeks...roll on the 11th September now!

Thanks Dr for buggering up my Weekend!

Well as with all good things they do come to an end! Chemotherapy didn't quite go as planned today. Went in as normal, saw my consultant and then waited for him to review my chest x-ray which I have at the beginning of every cycle. We waited and waited, then the Dr came back and said that he had just noticed a radiologists remark on the previous cycles chest x-ray, I don't understand all the medical jargon but basically an enlarged lymph node in the right side of my chest - possibly an indication that things aren't as stable as they seem. My Dr did say that he couldn't see any difference between the chest x-rays but he isn't a radiologist. So wanted to get it checked out. Chemotherapy was cancelled for the day and I am scheduled in for an emergency PET scan on Thursday. If the result comes back negative which he suspects, then I will have chemo on Friday...which buggers up my beer festival weekend. If it comes back and shows something then we have to revert to plan B.

A Better Second Week

Had a quiet week following chemotheraphy this time...just felt too whacked to do anything really. But I did have a much better second week. Wednesday I popped down to see Jen and RoRo. Rowan had his second photo shoot! Bit of excitement to the end of the day...Verity took Harvey out for a walk in the evening and when she came back said she had seen a snake! We all went back to the place where she had seen it to try and find it again, but nothing there. I walked a bit further along the bank and at the bottom of the ditch I saw it, it heard me shouting to Mum and V and quickly slithered up the other side of the bank so I only saw it for a few seconds...not long enough to capture it on the camera!

Friday was a good day too, caught up with some friends and then went out in the evening for Lucie and Ed's leaving due. First time I had been out in the evening for about a month. Friday was definitely a good day!

Its All About Raising Awareness

Hopefully some of you will be reading this, because of the emails I have sent, facebook messages I have sent or from me posting this on forums. I am starting to realise what a valuable tool the Internet is, especially for people affected by cancer at a younger age, as it is such a part of our lives.

Check out the blogs I am following too.

IT IS ALL ABOUT RAISING AWARENESS. PASS IT ON.

ABVD - Cycle 7, Day 15 - nearly DONE!

Sitting here writing this while having chemotherapy, the days of modern technology! Typically it is a beautiful day outside!

Saw my consultant as he was back from his holiday. Discussed my fatigue - it is quite debilitating, no matter how much sleep I get I am still tired, and I haven't been doing much at all, don't know when the last time was I went out in the evening to the pub! The Dr said it is a know side effect of ABVD and it does become more prevalent the more cycles you have. He said within 2 months of finishing I should have my energy levels back. I have been doing a bit of reading on the lymphoma website and one of the things I came across was about getting the flu vacine. I asked him if I should have it this year and he said that yes that would be a good idea. Talked about whether I would have any other treatment after chemotherapy, basically it depends what the PET scan shows, and what type of remission I am in, but in all likely hood the chemotherphy will be it - fingers and toes crossed. Discussed a bit about 'if the cancer came back', which is of course is always at the back of my mind and always will be, he said we would discuss percentages after the final PET scan but did say that the odds were on my side. Chatted a bit about the treatment I would recieve if the cancer came back, basically it depends, if and when and where it manifests itself, but the end result would probably be more intense chemotherapy.

Cancer forever more will be in my life, like it or lump it!

ABVD Cycle 2, Day 15 - nearly DONE (just dacarbazine to go)!

7 weeks and 4 days until HOLIDAY!

BTW - I am trying to recruit more followers so spread the word!

Who Do You Think You Are?

The first few days after chemotherapy this time I felt rubbish, really really tired and sick! Spent the days in bed feeling sorry for myself. Friday was V's birthday, 20!!! So we went out for Prezzo's for lunch, still felt pretty rubbish to be honest but did manage to eat a bit, was pretty quiet and not much fun so sorry V. Slept for most of Friday afternoon and then had pancakes for tea, have been craving them for some reason.

Friday night I had a really disturbed night and woke up feeling very flu like - the side effects of the PEG injection. Had a whole day of Prison Break!!! Well actually not the whole day, Mum got the family tree out in the afternoon and we became absorbed in that - even missed Big Brother! Finally by bed time the sickness had subsided.

Sunday was a vast improvement, no sickness, hot flushes, aches or pains - think the PEG has finally kicked in. Monday I had back pain all day, but I think it was a result of it being that time of the month not lymphoma related, although it did bring back flash backs of the times before I got diagnosed when I was in excruciating pain.

Have spent most of last week being consumed by the family tree, it is very interesting! Our very own Who Do You Think You Are? If history was like this at school I might have liked it! And have been trying to fit in the odd bike ride, steroids don't do anything for your figure, and I have a holiday to prepare for! Met up with Sarah who is swanning off to Italy for a month, very jealous - Italy is defiantly on my 'things to do when I feel better list', have never been and have always wanted to go, everybody raves about it!

Saturday I went to watch Leanne's friend race at Snetterton Race Circuit, managed to get some good photos and the caramel shortcakes went down a storm. We had to do our own bit of rally driving to get there in time! J came second - well done!

BTW - have now finished Prison Break season 3 and need another new box set to start - done all of Lost and 24, any suggestions?!

Race for Life

This year, Mum, Verity and my Aunt Jill did the Race for Life again! Jill's 4th year of doing it and Mum's 3rd year. We went to watch them run/walk the race in Bedford. I had never been to a Race for Life event before but it was surprisingly emotional, everyone is there really, just for one reason because they have been affected by cancer, either personally or through someone they know. I loved reading all the pink notes on peoples' backs.

Before, after and during shots!

They all did extremely well, Mum and Verity beating Mum's previous years time, coming in at 28.03 minutes and Jill power walked around coming in a little after. People of all ages, fitness levels and for different reasons came over that finish line but hopefully next year I won't be stood watching I will be trying to beat 28.03! We finished the evening off with a BBQ although due to English Summertime had to eat it inside because of the rain, typical!


Monday we went to Cambridge for a bit of retail therapy and I had to get some stuff for my summer holiday before they whipped all the summer stuff out of the shops and put the Autumn stuff in. It was quite a successful trip, managed to get quite a lot of stuff. Had to have an hours sleep in the afternoon though, after only 3 hours of shopping it is not very good.

Tuesday was chemo day - ABVD Cycle 7, Day 1. They had to redo my bloods when I got there because my neutrophills were really low. With chemotherapy it destroys lymphoma cells by preventing all cells from growing and dividing. Your blood count can become temporarily low during treatment because chemotherapy is unable to distinguish between growing cancer cells or normal cells.


It is a particular concern when white bloods cells are low, neutrophills are a type of these. There are several different types of white cells, all of which function in various ways to protect the body from infection. Neutrophils, for example, protect the body by eating microbes and other potentially risky particles. They produce pus and help to alert you to the fact that an infection may be present, by causing pain, swelling and redness. White blood cells are important as they provide the body’s main protection against infection. When the number of white cells, specifically neutrophils, is low, this is known as neutropenia.


With my bloods being redone I had to wait over an hour before the start of treatment. They had a few issues with my port, at the beginning it wasn't behaving, the nurse said that sometimes it can become pressed against the vein wall, because it is such a big vein it is in with a huge blood flow and can become stuck against the wall, so she had to fire it off the vein wall with saline solution! Started chemotherapy before lunchtime, had my 2 injections and then 2 drips. While the drips were going through I watched Broke back Mountain, was a bit bored to be honest!


Because my neutrophills were so low, I had to take a PEG (Neulasta to give it its full name) injection with me to have down at the surgery tomorrow. This should engourage my bone marrow to produce more white blood cells helping me fight infection and hopefully make me feel less tired.


Felt very tired by the end of the day and icky - ABVD Cylce 7, Day 1 - DONE!

Tired, Tired, Tired

Saw my consultant today as he was going on holiday Saturday so I wouldn't be able to see him at chemo on Tuesday. He said my heart echo was all clear, as he expected, he said it in a load of medical jargon but basically my heart is still beating away ok!

Told him about my extreme tiredness. The last couple of weeks I haven't really done a lot at all because I have felt so tired and lethargic (bloody missing a night out tonight because of it, hope you have fun people!). The other afternoon I ended up sleeping for 2 hours in the middle of the afternoon. He said he didn't think it was the lymphoma coming back because I had none of the other symptoms ie. lumps, sweats or itchy skin. He suggested it might be an a cumulative effect of the chemotherapy as I have had my fair dose now, 6 cycles, 12 treatments...only 4 more to go! He said he would take a rain check on it in a couple of weeks.

We ended up being back home by 10.00am as our appointment had been at 8.20am, haven't got up that early for a long time! On the way there we were ahead of the commuters!

Made some fudge, white chocolate and oat biscuits to occupy myself for the rest of the morning. The recipe made a load but they are gorgeous so I am sure we will manage to get through them! Also rang around a few insurance companies about travel insurance, managed to find insure cancer who will hopefully insure me but it wont be cheap and they can only do the paperwork 4 weeks before you travel.

With the travel insurance kind of sorted I booked the holiday. So from the 3rd October to 10th October, Leanne and I will be here...

...sipping cocktails by the pool!

It is a place called Kalkan in Turkey -

'Nestled between the Taurus Mountains and the Mediterranean, Kalkan harbour is a sophisticated town combining all your holiday needs – history, culture, entertainment, rest and relaxation. The town boasts an array of sophisticated restaurants, boutique hotels and elegant rooftop bars in the evening, while in the day visitors can choose from a range of nearby beach clubs or vast stretches of white beaches in nearby Patara' - Tapestry Collection Website.

10 weeks Saturday and counting!

First Post :0)

Well this is my first post...

Have decided to start a blog after reading several inspirational blogs on the internet, and finding them helpful. It's something to entertain me as well, while I while away the days until my last chemo session...8th September!

To set the scene I was diagnosed with Hodgkin's Lymphoma back in February of this year and since then my life has changed dramatically. I had just returned from a years travelling back in November (photo - me and travelling bubs, taken last October on Whitehaven Beach, East Coast of Australia) and life couldn't have been better, it had been one big party since I had been back, going out every weekend and catching up with friends and family.

They do say cancer is a life changing experience and it definitely makes you see life differently. Funnily enough 'Look at Life Differently' is the title of the lymphoma associations photography competition this year.

What a good lead in, to allow me to tell you that I will be littering these blogs with 'pretty' pictures as since my diagnosis I have invested in an SLR camera and have been happily snapping away ever since!

This blog is designed a) as a way to keep those around me informed of my progress and b) provide an insight into living with lymphoma, to help those who have been diagnosed or for people who simply want to find out more.

If this blog just helps one person, it will be worth it. Happy reading :0)

Heart Echo

Monday was the day of my heart echo, apparently routine if you have more than six cycles of ABVD. Initially alarm bells started ringing when my consultant said he wanted to do one, but he reassured me that it was usual and he suspected everything would be fine.

Went out for a walk amongst the countryside in the morning with Mum and Harvey (my dog!) and as it was a nice sunny morning, took some photos! Ended up with Mum lying in the corn to get a photo of a poppy, dedication for you!

An echocaridiogram, to give it its full name, is a scan of the heart, really similar to an ultrasound. Essentially to check the heart is there, still alive and kicking! It was my kind of scan because I didn't have to fast for 12 hours before, of have any radiation which normally makes me puke!

Had to wear the compulsory hospital gown! The echo all in all took about half an hour. It was a painless test although a little uncomfortable at times, when the Dr was probing to get a picture of the bottom of the heart. The worst bit is getting covered in the gunky gel! At times the doctor turned the sound on, and all I could hear was, swish, swish, of what I guess is the blood flowing through my veins. I couldn't see the monitor because I had my back to it so it would have been nice if the doctor had described what he was seeing and doing but he didn't! It has been the same with all the other scans I have had, they don't like to tell you anything at the time, it is down to the consultant to give you the results. Should get the results on Friday when I see my consultant.

Another procedure to add to my list and home for lunch, bonus!

Four more to go...

ABVD cycle 6, day 15 - DONE! Four treatments to go, still 8 weeks though, blah!

Girlies Run the 10k

Ascot yesterday and London today. Dad and I went up to watch Leanne, Lucie, Becka, Helen and Nicola ran the London 10km run for the Lymphoma Association. All in all they raised over £1800, an awesome amount. They came in just over an hour, which was really good, made me very proud. They all did really well. It was a lovely day, nice and sunny and I enjoyed walking around London as well as watching the race.

The weekend ended on an adrenaline high. At about 8 ish the phone rang, it was our neighbour saying the field was on fire. Went outside and it was, the sound was immense. The fire brigade had been called and arrived pretty promptly, in fact it wasn't just one fire engine that arrived...three did! The fire wasn't that big but the firemen said if the field hadn't been set aside the whole thing would have gone up - scary. What a way to end the weekend!

A Day's Outing to Ascot

Saturday we had a day at Ascot, which was wicked. I have never been to Ascot and the stands were amazing. We had a box for the day which we shared with some of Dad's work colleagues and their families. The only down fall of the day was the weather. Master Mylo ran in the forth race. He did really well seeing as it was probably a race above his class. Of course I captured the day on film! Managed to get some interesting shots from the balcony of the box. Roll on Ladies Day next year!

Family shot before we left.

Master Mylo - pre parade ring.

Master Mylo after the race.

Cooling off after the race!

And some other shots of the day...