My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Wednesday, 30 June 2010

Prison - Day 3

I slept better last night, not even a text from Shelley woke me up, but woke up with an even worse chest, and my cough has also got worse. The air conditioning doesn’t help – but obviously there is no option to have it off!

Felt sick most of the day. Spoke to Nr McNamara and another doctor. The other doctor asked about my chest and breathing, and I explained it had got worse, and I’m ‘gurgling’ when I breath. They will keep their eye on me, but there’s not much they can do from behind a lead barrier, with a no-touch/no close contact rule in play!

Dinner and tea not worth eating – again.

Shelley was so lovely and got an old University friend to visit me briefly and bring me a few goodies (seeing as I can’t purchase anything from in here) – coke, milk, jammie dodgers, chocolate buttons and cheese string! Yum!

Radiation reading dropped to 79 – a steady drop, and the ‘Radiation Man’ said I will most likely be here until Monday, which is what I expected.

More watching TV programs previously downloaded to my laptop, reading magazines, and looking forward to my shower later!

Prison - Day 2

It’s amazing how things merge into one another.......
Breakfast, doctors, dinner, doctors, tea, shower, sleep – that’s easy! Lol
I don’t think my blog will be very exciting!
Scarily a man tried to take me for an x-ray this morning – erm....hello, I’m radioactive!
Apparently (as I found out later) I should have had it yesterday, but for some reason didn’t, but obviously won’t be having it today either!
Radiation levels measured late afternoon/early evening, down to 97.

Monday, 28 June 2010

Admittance to Prison – Day 1

After waking up this morning at the hotel, Shelley, Mark and I went down for breakfast, then went to a local convenience store so I could buy a few snacks for in hospital.
We then picked up my luggage, and walked across to the hospital, waited a short while for a lift, and went up to the eleventh floor, and straight to the ward (11 east).
We arrived at 10am and after a while someone noticed us, asked why we were there. I explained I was here to be booked into a room, as one of Dr McNamaras patients. She then rudely asked “And who are you?”.
I gave her my name, and she led us to the relative’s room to wait. We waited, and waited, and someone came and told us the room was being cleaned. Shelley and Mark had to leave at 11:30 to go and get their train, and at about 11:45.
A nurse took my details and asked for MRSA swabs. Dr McNamara then came in and explained a few things, and told me the Nuclear Medicine team would come early afternoon to give me my treatment.
After he left, a nurse came and took bloods from me. Someone brought me some dinner (urgh).
About 1pm another doctor came in and examined me, and took a few notes.
Then another nurse came and took more blood, as they couldn’t find the first lot that had been taken. A student nurse then came and did my obs, and told me I had low blood pressure.
Shortly after, a nurse came to take MORE blood as the second lot had apparently clotted!
About 3:30pm the Nuclear Medicine team and gave me my treatment, which took about 30 mins. It came on a big powered trolley! A lead screen was placed inside the door at the entrance to the room, and I am not allowed past it, and no one is allowed to my side of it. One of the team then checked my radiation level, which from 1 metre away was 113!
I was told that when it is down to about 30, is when I can leave – generally 5-8 days, usually more on the 8 days. I will have my radiation level monitored each day.
Meals are passed over on paper plates, plastic knives and forks, polystyrene cups, even bits of paper that come across to my side must be thrown in the bin for proper waste disposal!
The rest of the afternoon and evening was spent eating tea (urgh), and chatting online!
Trying to sleep is the next task!

Thursday, 24 June 2010


Tonight I got the call......I'm going in for treatment to the Royal Free Hospital in Hampstead on Monday!

Tuesday, 22 June 2010

Getting there (still slowly, and painfully!)

Ok, so, Bank account set up, deposit (£10,500) paid to the Royal Free.
Doctors at Royal Free have to wait for test results before giving me a date.

MUGA Heart Scan done, PET scan done, Bone Marrow Biopsy done (although I did wake up halfway through! Ouch!)

Yesterday was my Christies appointment, where I decided to chase test resuts.
MUGA Results - 64% (the doc said this is spot on)

PET scan results - fluid on the lungs, cancer in lymph nodes on left side of neck, cancer in lymph nodes under right breast muscle, under right arm, in right neck, in chest (causung pressure on sternum and a rash).
Luckily(?) even though its spread to my left side, it's still all above my diaphragm.

Fluid can be removed if it gets worse and causes problems.

Bone Marrow Biopsy results take's been nearly 2 weeks, and we're expecting another week or two depending if the pathology lab will rush the testing. We're still apparently waiting for the bone to dissolve.......nice.

Symptoms now include pain under arm, sternum, neck.
Shortness of breath, especially when laying down (this is obvisouly made worse by the tumours pressing on my lungs, and also the fluid), wheezyness, and extreme fatigue.

I've been extremely tired for a few weeks, sometimes sleeping most of the day and night. Have had 2 blood tests done which show my bloods are all at good/acceptable levels. (White and Hemoglobin both at about 10.2).
Doctor at Christies said the fatigue is just part and parcel of the lymphoma.
It's hard to get up out of bed most of the time, but I am trying, not that I can manage much when i'm out!

Tonight is the Fundraiser Meal. Quite looking forwards to this, as a lot of people are going to be there, lots of friends, hopefully good food too!
We sold nearly all the tickets, which we are surprised about, as we've only had 2 weeks to sell them in!

Hopefully next time I update I'll have a date for my trip down to London to the Royal Free Hospital!

Monday, 7 June 2010

Slowly slowly catchy monkey........

I don't know where time has gone since I last wrote a blog, and i'm not sure I remember everything, but i'll try my best...

Well, the most prominant thing I remember is 23rd May - which was our fundraiser 'Pamper Day'.
Amazing weather for the day - which helped, as we sat outside most of the day (ooops, got sunburnt!).
Lots of different alternative therapies were available - Reiki, different massages, reflexology, indian head massage, hand massages, tarrot card readings etc etc!
We also had some professional photographers - Chris and I had some lovely pictures taken.
The whole day raised £1055.60!!!

Since then, i've been to Christies once, and had my steroids stopped (again, they weren't doing anything).

I've been to 'Southlands High School' in Chorley, as they had done some fundraising. I went, with Melissa to receive the cheque. The school had raised a whopping £1414! The Chorley Guardian also came and wrote a piece and took pictures.
'St Pauls', my old primary school in Farington Moss did a non-uniform day, and raised £338.

Batleys Cash & Carry (where I used to work, and also I am a customer of there as I use it for my shop) have been raising loads of money in store!

The 'Dogathon' went ahead on Bank Holiday Monday - can you believe I actually walked the whole thing! Chris and Teagan were with me, along with my sister, and at least 20 other people! The weather was great, and we had a lot of fun (the dogs were all well behaved too!)

Chris and I (and Teagan) spent Bank Holiday weekend up in Shap in his parents caravan. It was really nice to get away from home for a while, and forget about being ill (even if I was in a lot of pain most of the time!)

I spoke to the Royal Free a few weeks ago, and was told once I have £10,500 - enough for a deposit - I can transfer it to them, and can get 'booked in' for the treatment. They will then 'bill me' for the rest of the money after the treatment. Because of this, at my last appointment at Christies, I asked the doctors if they could start things moving by booking me in for the tests I need before I go down to the Royal Free.
They acted pretty quickly, and on Friday I had a heart scan, this Wednesday I have a PET scan, and Thursday I have a Bone Marrow Biopsy (this will be my third!).

The bank account was finally set up on Friday, after much chasing up, because banks seen to love to work slowly!
All the money and cheques up to date were paid in, and we're just waiting for the cheques to clear, and we will have an accurate total on how much we've raised.
We're sure we've got the deposit, and getting very close to the total we need.

We have a fundraiser on the evening of Tuesday 22nd June, near Preston, which is a 2 course Italian Meal for £20 (£10 of which pays for the food, and the other £10 goes to my fund) - we've got the, whole restaurant - and hoping people will come, as the 'Helping Heather' team would love to meet the people who have helped raise the money so far! It should be a great night!

Lastly, I've had my pain relief changed to morphine, as I spent the whole bank holiday weekend in pain, and the Tramadol wasn't working any more :(
I've also found a new lump on the left side of my body - which has always previously been clear - so it's been quite an emotional time recently.