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!
Thursday, 30 December 2010
I got home about 6:30 on Christmas eve. We managed Christmas Dinner at Mums house (with a nap on the sofa), and have muddled through the last few days as always (eating loads, but getting quite dehydrated as I can't drink after chemo for some reason).
29th December were Lung Function Test and ECG at Wythenshawe Hospital in preparation for the transplant.
Today I had to go back to Christies for a blood test, as last week my HB was low.
My blood results today were as follows;
HB - 8.6
Whites - 1.8
Platelets - 57
All still rather low, but luckily no transfusion needed (just).
Wednesday, 22 December 2010
Should be out sometimes x-mas eve late afternoon/early evening!
Very bloated as i'm on massive bags of sodium chloride and potassium 24/7, aswell as the bags of chemo- very uncomfortable!
I've been rather depressed this week, as not only is it mine and OHs first christmas together, and we're apart this week....today is 15 years since my Dad died of cancer. He was also a patient at this hospital (didn't die here though) - but doesn't help the depression!
Saturday, 18 December 2010
This will probably repeat a lot of the last entry, but here goes anyway.....
Had 2 scans after 2nd chemo, and got the results a fortnight ago.
It's worked really well, so doctors are pleased.
We got to see the PET scans, which was amazing to see how much the cancer had shrank, and also how less active it is.
Don't get me wrong, i'm not cured, and it hasn't gone, there is a LOT of cancerous lymph nodes in my chest. The ones under my arm are a lot smaller and less active.
A lot of the ones in my neck have gone, and the ones that remain are not very active at all.
Last Tuesday Shelley came with me to the hospital as I had an appointment with the doctor who deals with the transplants.
I should be having my transplant in about 4 weeks, but before I have it, I've got to have some organ functions tests, and Shelley (my donor) also has to have some tests, and have some medication just before she donates - to stimulate the growth of more stem cells.
Because i've got to have these tests, the doctor wants me to have another dose of chemo - not because I 'need' it, but more because he doesn't want me to go 8 weeks with no chemo, as my cancer is very agressive, and will start to grow in that time (it's 4 weeks since I finished 2nd chemo, and 4 weeks till transplant).
They tried to get me a bed late last week, so I could be out by the start/middle of next week, but unfortunately there were no beds until Monday.
So I go in on Monday morning, and they will try to rush the chemo & fluids as much as they can to get me out on Christmas Eve. If not, it will be Christmas Day that I get out on!
I have to go back on 4th January to see the transplant doctor again (I will have had organ function tests by then), and hopefully should have the transplant a week or 2 after that.
Friday, 10 December 2010
The past 12 months have been bloody hard, harder than I thought anything I go through ever would be.
But do you know what......I've made it this far with the help of friends and family, and I know I can make it further.
I got out of hospital on 13th November, and went for a CT scan on 17th November. Earlier than they wanted me to have a scan, but the next available appointment would be too long to wait, so this one had to do.
It wasn't fun - as usual it didn't run smoothly (come on, face it, what runs smoothly for me!)
I was taken through to the back, told to put my gown on, and then proceeded to sit there for over an hour as they forgot about me. The actual scan went ok, which was good.
Next was waiting a few feeks for my PET scan. Hard doesn't describe it.
Pain in my chest started to come back, and the uncomfortable feeling under my arm returned. Of course, me being me, I was fearing the worst. I've had to put myself back on Tramadol periodically for the pain.
Luckily I haven't had any problems with my central line, which is a bonus.
Tiredness and depression have been my other enemies since I came out of hospital. I've had no drive to get up and do anything, and have slept a lot during the day
The day came for my PET scan (Friday 3rd December), and when I got there the nurse recognised me - i'm not sure thats a good or a bad thing!
The scan went fine as usual - just freezing when you are laying on that cold metal table with freezing air conditioning blowing onto you!!
Now to pass the weekend until Monday - results day.
Monday came after a sleepless Sunday night.
Mum and Mike came with me - both for moral support, and as I wanted them both to be there for my results because I felt that day would be an important day and I needed the people I love around me.
All Sunday night I had been planning my 'speach' to the family for when the doctor told me the chemo hadn't worked as planned. How sorry I was for letting them down, and how worried I am for what comes next as I wasn't sure what kind of chemo I would be able to have next, as I've had most of the drugs they use for Lynphoma (and for relapse patients).
Of course the doctors were running behind....don't they always when you are anxious.
Over 2 hours after my appointment time, the doctor (Adam) finally came into the room.
He said hello, shook our hands, stood there and said something along the lines of "You had your scan on Friday and everything is looking good."
Thats when I went into shock, and I think I had to ask him to repeat what he had just said! I really had set myself up for more bad news, as all i've had for the past 20 months is bad news.
He told us that the tumours are less active and smaller. I asked if we could see the scan, as i've never had the oppertunity to see one.
We trooped into the doctors office, where my scan from Friday took up half the screen and the other half of the screen was taken up by Septembers scan.
I think my words were "wow".
It's always hard to remember what was said (by others and yourself) when you are in shock!
It really put things into perspective, as it's one thing for someone to say "the chemo has worked and the cancer is shrinking and less active". It's another thing to SEE that the cancer is less active, and there are less tumours, and the ones that are there are smaller.
The big one under my arm was showing up black on Septembers scan (black is very active), and on Fridays scan it was gray! I didn't realise how many lymph nodes in my chest were cancerous before seeing the scan, but comparing September to Fridays scan was great, as even though there is still a lot of cancer, the nodes are smaller, and less active.
Seeing my neck was great, as there were only a few very light gray nodes - which I was hopeful about anyway as both myself and Kim [the doctor] haven't been able to feel any lumps for a while.
Now to wait until Tuesday when I see Dr Bloor again. He might decide I need another dose of chemo, but hopefully with how well the chemo has worked I should be able to start planning to have my transplant. On Monday the doctor (Adam) said we are probably looking at January.
Well done if you've got this far - this has been a long entry, but now you know my good news :)
Wednesday, 10 November 2010
A few Fails for the hospital on Monday............
I arrived at my appointment time (9:30am), queued for an hour to have my bloods taken. Saw the doctor (another new one) who examined me, and as my bloods weren't back, I had to wait on the seats in the corridor to find out if my bloods had risen enough for me to have chemo.
I seemed to wait ages, and every time the Dr's room door opened I looked up, and a nurse commented about this, so she went to find out if the results were back yet. Eventually she said they were back, and I could go ahead with chemo, but had to wait for the doctor to sort a few things out.
I waited, and eventually the doc came out and said bloods are fine...."Oh, and by the way, you could have had chemo last week. The machine we use wasn't calibrated properly, so your bloods were actually fine"
As you can imagine, my Mums face and mine dropped. WHAT?!
So I've wasted a week for nothing, because someone hasn't done their job properly!
We were then told she needed to re-prescribe my chemo for thr full dose (not the 75% I had last time), and this would take her some time, as she was going to see another patient! "Go for some lunch" she told us.
We did....I think I needed to walk away at that time anyway as I was fuming from being told the 'news' about the previous weeks blood.
After a quick lunch we came back, collected my notes, and went down to the 'Admissions Unit'.
I handed my notes in, and was asked the following questions.......
Q: "Have you had bloods taken today?"
Q: "Do you have a line?"
A: "Yes, I have a hickman line"
I We were then told to sit down and wait.
I knew I would be waiting a while, as the room was pretty busy and there weren't many seats left.
We waited.....and waited....and after about 1 hour and 15 mins, Mum got sick of waiting and went to the desk to ask when I would be going up to the ward.
The lady said she would check, and came back and said about waiting for a Cannula to be put in my hand..
ERRR.....I HAVE A LINE! I kinda shouted! "I told you that when you asked me when I walked in".
Her reply.... "Oh, we put your notes in the wrong pile by accident. You could have gone up to the ward an hour ago".
Mum kind of lost it a bit, we were given a feeble excuse of "Ohh, we are busy today".
Anyway, off up to the ward! (Ward 12 again - which is what I wanted).
Mum left about 4:30, as she needed to get home, and there is no point sitting around waiting for nothing!
I eventually got connected up to my chemo at 7pm!!!!!!
I then set my laptop up... low and behold you can guess the 'FAIL' to this part......of course, it was down. It's now nearly Wednesday afternoon and it's still down.
Luckily I brought my dongle with me, so am trying to keep occupied, but having to pay for the privilige!
I was lucky enough to have 3 visitors yesterday....My sister, Mum and best friend.
Not sure there will be any today, but I can't wait for tomorrow, as my fav person will be coming :D
Well I suppose thats all for now....there never is much news when you're stuck in a ward in hospital!
Friday, 5 November 2010
I was discharged on 16th October - sent home with steroid eyedrops, anti sickness tablets and some tablets for uric acid [I think].
Sunday we went to a local pub for a proper Sunday dinner, with a massive Yorkshire pudding and all the trimmings - Yum!
Fallout - New Vegas [ps3 game] came out, we had a fun day in Blackpool on the slot machines, played a few more PS3 games, slept in [well, chemo makes you tired!] and eaten out a lot!
My hair started to fall out about a week ago - slowly at first, but with a vengance now. I've still got some...although it's very thin, and I'm not sure how long it will last!
I went back to Christies on 22nd October for a check-up. My platelets were very low - down to 45. They had dropped from over 300. I also had a slight urinary infection [ouch].
Chemo was planned for 1st November, so I packed my bags and off I went. Had the standard blood test, saw the doctor, and waiting for the blood results. Only to be told my white count was too low for chemo.
My platelets had risen back up to over 300, but my neutrophils were down to 0.7, and they need to be 1 or above to have chemo.
So, back home it was and I have to return on Monday 8th to see if my bloods have risen - so fingers crossed they have.
Also, Friday 5th November will be a day I will not forget :)
Friday, 15 October 2010
Theres been some bloody fantastic things, and then the chemo (which for chemo is ok...but still not as fantastic as other things).
I had my Hickman line put in on Friday 8th.
Now of course I knew what to expect as it's my second line in as many year. It was a little more painful than the first time though, as this time it's a double lumen (which means it has 2 ends on it, so I can receive more drugs at the same time). But overall the experience was as expected, with little soreness afterwards.
The weekend to follow was one of the best in my life. Good times :)
Monday 11th saw an earlyish morning to come down to Christies to start Chemo.
I arrived nice and early, as requested, got brought to the ward, but didn't start on any drugs till about 3:30pm - which knocks the whole regeime back!
If anyone is interested, this is the treatment i'm currently having: ESHAP.
All has been uneventful I guess. 2 lots of visitors. (Tuesday and today)
Eyedrops 4x a day which I was totally not used to. 2-3 drip pumps at a time.
Bloody steroids making me hungry as hell and suffer from bad insomnia (thank goodness for Temazepam!) I've put on 1/2 stone since Monday, which I'm not happy about. 2 people have now commented my face looks different :(
I've had a bit of a depressing day today. Feeling very homesick and teary, and just need to be back with the people I love I think. Even if it is only for 2 weeks till I'm next in here again.
Lots and lots of feelings of guilt too. I know it's not my fault i'm ill, but I hate putting people through all this stress and shit. No one should have to go through it, and I hate myself for doing it to those close to me. I've really struggled with these feelings today - it's like a big fight inside my mind and it's hard to deal with.
I should have been home today (Friday) but because of the late start on Monday, it's going to be tomorrow that I can escape.
Cabin Fever is not good.
Thursday, 30 September 2010
I saw him last year when I was supposed to have my transplant, but obviously that all went tits up, so I was there again today.
He just went through everything again - but obviously this time it was geared around an Allogenic SCT, rather than an Autologous transplant.
He told me the risks, the hospital stay, the chemo, the blood tests, the recovery times, and he also explained in more simple terms how the transplant works.
IF (thats a big if) the chemotherapy works enough for me to have the transplant (tumours need at least a 50% response), then I will have the transplant quite soon after - so if things go smoothly (do they ever for me?), we are probably looking around x-mas time.
Recovery time for an Allogenic SCT is about 12 months.....................so that plus Chemo time in a few weeks we are talking minimum of 15 months.
There isn't even a big chance of it all working......but it's this route or nothing.
Monday, 27 September 2010
Tuesday, 21 September 2010
Now it's about 14 weeks post treatment. So much time has passed, and all I've wanted is my life to be as normal as possible - which meant not writing here.
I had a scan at 4 weeks which was very positive - nodes in my neck were no longer active. Chest tumours had shrunk by half, and under arm by 2cm. All fluid in my lungs had also cleared, as had the rash on my chest. I had energy, and could actually breathe.
Since then I seem to have been on the up - doctors have been pleased with my progress. Doing their usual prodding and poking they continued to think the tumours were shrinking.
My bloods continued to drop, but the lowest they got was my neutrophils at about 1.2.
After 10 weeks of continuous weekly hospital visits they said I didn't have to go back for my last few appointments as I'd had no problems, and my bloods were on the up. They booked me in for a PET scan, and to get the results a week later.
The LEP and both Granada and BBC have all done a few more pieces, so I was famous for a short while again.
Hearing I didn't need to go back for a few weeks, and also starting to fall back into depression - like a big chasm below me - only holding onto sanity with my fingertips, I requested my PICC line to be taken out, and I booked a holiday with Mum.
Now I'm back home, and my PET scan was today. I hate those things. hate.
The bed you lie on is metal and cold. The room is freezing. The arm rest thing is metal and cold, and a conbination of havig your arms above your head, and your whole body freezing makes your shoulders feel like they are being ripped out of their sockets. The nurse counted, and in the past 18 months I've had 5 PET scans.
I'm sure I'm always going to be slightly radioactive. Just look for the 'glowing' house on google maps.
Results day is 27th September.
In 8 years I've never been nervous about scan results. This time I am.
All I want is for the treatment to have been a massive success, then I can get on with chemo and a transplant, and get my life back on track.
I want to enjoy myself. I want to travel. I want to work. I want to feel 'normal' again.
Monday, 12 July 2010
Waited 3 hours for medication, which was then all wrong.
Luckily Mark rescued me, and we got a direct train home, which took just over 2 hours - I could just cope with that, whilst inflicting my radiation on the general public.
The past week has just been normal, apart from not having close contact with anyone. After tomorrow I'm 'safe' again around adults.
I went to Christies today for a check-up and blood test.
My White count was 4.5, HB 11.4, and platelets 566.
My platelets (high because of the lymphoma) are the ones that are most expected to drop in the next few months (because of the treatment), so I'm to be a regular visitor of Christies for the next 3 months.
I'll be going [at least] every Monday! Oh, the fun!
Firstly, if I was going home tomorrow, I really think I would discharge myself. Theres no way I could stand another day of being treated like crap.
Yesterday (Saturday) my breathing and chest was bad, and the doctor who came round said I should go on a nebuliser, using Salbutamol. The nurse came into my room at 3:30ish and set it up, showing me where to put the liquid, and how to turn the air on and off. The she left. Did she tell me when to turn it off? No. Luckily I know. Did she, or anyone else come to check I was ok, if it was helping, that I had done it right? No.
Haven’t mentioned in my blog earlier, but been having a problem getting drinks. For my first 2 days, someone came round with a trolley shortly after each meal was served to offer tea or coffee. This suddenly stopped, and no amount of telling/complaining to different people made any difference. I told the radiation man, who told the Staff nurse, who came and asked me why I hadn’t told her. Errr, I had, the day before.
Well, today things have come to ahead – after only being offered a cup of tea at breakfast time, and having to buzz and ask for one the rest of the time, It came to tea time, and I was quite hungry.
Following every other day I have been here, someone comes round about an hour before serving time with a menu, and takes my selection. In an evening, it’s approx 5pm when they come with the menu, and 6pm when we are served.
Tonight it got to just after 6pm, and no one had even been with a menu. As you can imagine, I was pretty hungry by now, so pressed my buzzer so I could ask what time meal time was (I don’t know, perhaps they have it late on a Sunday?!)
Pressed my buzzer and waited a while, and a lady popped her head round the door and barked “What do you want?”
Me – What time is supper time? (it says supper on the menus, so thought I would say that instead of the Northern ‘Tea)
Her – What?
Me – What time is supper time?
Her – What?
Me – [getting a bit annoyed] Food. What time is food time?
Her – Medicine?
Me – NO. Food, you know, eat.
Her [shouting] – you have to wait while we prepare it.
I started to tell her I hadn’t even seen a menu yet. She went and got a menu, and held it out (standing at the door, where I can’t even get near)
Her – Here. I come back for it.
Me – You can’t, once I have it, you can’t have it back
Her[shouting] – I CANT COME IN. (She can come in, only up to the barrier, like everyone else). TAKE IT.
Me – I can’t.
Her – I leave it here. [and put it down on the sink, that I’m not allowed to touch]
Me – Can you get a nurse please, I’m not happy.
Her [storms out of the room and begins to shout] – ROOM 10. SHE SHOUTING. I CAN’T DO 2 THINGS AT ONCE.
Honestly, I’ve never encountered anyone who works in a hospital to be so hostile! I’ve been nothing but polite to the people who have brought me food and drink, but if she comes near me again, there won’t be a ‘please’ or ‘thank you’ in sight!
Friday, 2 July 2010
Radiation man came early to tell me it will definitely be Monday when I am released. Rads are 55.
It’s getting harder to write anything, simply because nothing is happening, and I guess when you are cut off from speaking face to face with people (apart from the odd word from doctors/nurses popping in), everything starts to blur into one.
I’m glad there’s no clock in the room, as I’m sure each hour would feel like a day. Only the weekend left here I suppose, but I’m unsure as to whether that will be worse and time will go slower or not.
Thursday, 1 July 2010
Didn’t really sleep well last night, and my chest is tight and breathing laboured. Damn aircon.
I managed to have my breakfast (Rice Krispies) before the porter came. He was actually nice and chatty!
I was wheeled down to Nuclear Medicine (yes, actually allowed out of my room for this!), told to empty my bladder and remove my jewellery.
Not sure what the scan was – to measure radiation I think, but I’ve never had one of them before. After the scan, I was wheeled back up to my room, had a cup of tea, and settled down for a nap seeing as I was feeling tired.
The ‘air’ outside the room actually helped ease my chest for a short while.
I got woke up by a nurse, and a delivery man – bringing me a very special package for Bernie, a lovely friend. The package included drinks, crisps, chocolates, smellies, a lovely card, a word search book, and a pen. I was feeling quite down before I received it, but it definitely cheered me up!
After that was lunch – a blob of food on the plate, not resembling what it was supposed to be!
The doctor and nurse popped in to see if I was ok, and the Lymphoma Nurse gave me a carrier bag full of magazines.
So far the rest of the afternoon has been a blur. I remember watching things on my laptop, and probably having a doze, but I’m definitely having one of those ‘off’ days.
I got a message on Facebook from my Mum this morning, which strangely brought a [homesick] tear to my eye!
Rads are at 60
Wednesday, 30 June 2010
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!
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
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
Tuesday, 22 June 2010
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 longer......it'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
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.
Sunday, 16 May 2010
I don't have a great writing style like a lot of people who write blogs.....I just write things down as they pop into my head, and hope it all makes sense when someone reads it!
Firstly, last weekend was a bit of a blur! I was so exhausted from the previous week of filming and meda and phonecalls! I think I was in bed most of Saturday and Sunday, and don't think that Chris and I actually got to do anything more exciting than watch weekend TV!
10th May I made it into the Lancashire Evening Post again. In the actual paper there is a lovely picture of my Sister and I - as she has been working really hard at fundraising and organising the bank account and online donations.
We now have a Paypal fund set up for online donations. If anyone does wish to donate, click on the following link - Paypal
Please use the email address: email@example.com to make your donations to - please also remember to mark the donation as a 'gift' rather than for sales/services etc (in the 'personal' tab). You don't need a PayPal account to do this.
I can't believe how many people have continued to donate to my fund, both through Paypal, and sending money and cheques to my shop. It really is overwhelming to receive the donations, and I will get around to thanking those personally who have left an e-mail address/home address.
But to those who have donated anonymously, I am just as grateful but can't thank you personally!
Every day we are getting post with donations and well wishes in, and i'll say it again - it really is heartwarming to know so many people care about me and my health and wellbeing.
We are still waiting for the bank account to be finalised - which should be this week, then we will be able to give everyone a proper update on how close we are to my target.
I went for my dose of Chemotherapy on 10th May, but the doctors have decided to cancel it, as it wasn't having the desired effect, and unfortunately my tumours had continued to grow - actually becoming noticable in my neck - which is rather scary.
A lovely friend from online, and in real life who owns a Grooming Salon in Blackpool has kindly organised a 'Dogathon' to be held on Monday 31st May. Details can be found on our Facebook group, or the direct link to the event 'Dogathon'.
I am hoping to show my face, although I don't know if I will manage the whole walk!
Thursday was off to St Catherines Hospice for daycare as usual, and Friday brought our first Fundraiser, organised by my amazing best friend Melissa :)
Melissa is a Body Shop At Home consultant, and has organised 2 Body Shop Parties at her house, charging a small 'entrance fee', and doing a raffle and a game! Not only is she donating all the proceeds to my fund, she is also donating all her comission!
The second even will be this Tuesday.
Her Parents have also helped to organise a brilliant 'Pampering Day' at their house on 23rd May, where local alternative therapists are giving up their time and skills to visitors. We are also having a few stalls and workshops, and once again, the 'entrance fee' is going to my fund, with a percentage of what the stalls sell also going to the fund!
Here is me, overwhelmed again, not knowing what to say at people being so kind!
My sisters friend Bernie came to the Body Shop party, and completely surprised me when she gave me some donations she had collected - leaving me speachless again!
Today (Sunday 16th May) 2 family friends; Mo and Sandra went to a local car boot, put a poster up about me and a collection jar, and managed to collect £100 from the kind shoppers who were putting their money in!
Today also saw my sister, Shelley and her Husband Mark doing the Manchester Bupa 10k race! Well done to them - they managed to raise over £600 for the Lymphoma Association, and did the race in a really great time!
Back in time to Yesterday; 15th May.....
I received a phonecall from Christies last week, telling me about a man who has recently had the treatment I am waiting for - he is under the same consultant as me, and asked if his number could be passed on to me.
I phoned at the start of the week, and Mr Drogie kindly invited Chris and I to his house to meet him and his family.
Mr Drogie was refused funding by his PCT, and they even refused when an appeal was put through, but luckily after his son wrote a few letters, they changed their mind and he was able to go to the Royal Free to receive the treatment a few weeks ago.
Chris and I drove down to see Mr Drogie yesterday. Him, his Wife, Son and Grandson made us feel so welcome, and it was great to be able to speak to someone who is going through the same thing as me, and has also met problems when trying to get treatment.
Our website is now fully up and running, thanks to Daniel!
I think that about brings us up to date!
Tomorrow will bring the District Nurse to flush my PICC line, and change the dressing.
Tuesday will bring the second Body Shop Ladies Night.
I'm sure the rest of the week will be as full, but hopefully I will be able to catch up on some much needed sleep!
Thursday, 6 May 2010
On Monday 26th April I went to Christies for my chemo. Chris came with me, and we had a talk with the doctors there - who seemed unaware that I had been refused funding.
I got quite emotional talking about it all, and the doctor I saw brought the Professor in to speak to me.
They were both dissapointed that I had been refused funding, and 'unofficially' told me that going to the media can be of assistance.
Chris and I discussed it, and decided to do something about it the next day.
Chris contacted our local newspaper, who seemed interested in my story, and organised to come round on the Thursday for an interview and pictures.
The reporter, Aasma Day was great - put me at ease (I was nervous), and took all the details down. The photographer took a few pics of both Chris and I together, and me on my own.
With it being Bank Holiday weekend, we weren't sure when to expect the story to be in the paper. Aasma said she was hoping the story would go big!
We had a nice weekend, and almost managed to forgot about me being ill for a short while! We went up to the lakes and stayed in a tent (whilst Teagan (my dog)) stayed in the caravan!
All was good, and everything since then has moved so fast!
On Tuesday 4th May, in the morning my Mum phoned to say she went to fill up the car with petrol, and spotted my face staring up at her from the front of the Lancashire Evening Post!
She bought a few copies so we could all have one!
Tuesday evening I had a call from BBC NorthWest Tonight - who wanted to come and film me on Wednesday!
Shortly after that, I received a phonecall from the Express, who wanted to do a piece which would be published on Wednesday morning.
On Tuesday evening, my story also appeared in the Telegraph!
On Wednesday morning, whilst waiting for the BBC crew, the Granada Reports crew phoned and asked if they could do an interview!
So Chris and I were interviewed and filmed by the BBC crew.
Whilst we were waiting for the Granada crew to turn up, the Lancashire Evening Post phoned, and asked if a photographer could come and take my picture, as people were offering to donate money!
The photographer turned up, and took hundreds of pictures of me on my own, and also Chris and I!
Then the Granada crew turned up, and did their interview!
Absolutely shattered, we had a rest before preparing ourselves to watch the news at 6:00pm and 6:30pm!
Watching the news was so surreal. It's actually very hard to see yourself on TV, especially in a situation like this.
Texts came in from friends and family, saying they had seen Teagan on Granada TV! Oh, and of course they had seen Chris and me too!
All that filming for a few mins on tv - exhausting!
Today is Thursday 6th May, and once again, I made front page news in the Lancashire Evening Post!
I really am overwhelmed at the generosity of complete strangers!
I really didn't expect so many people to want to help me when they don't even know me!
People have phoned my shop, given donations, e-mailed me!
My sister has been working so hard! She set up a facebook group, called 'Helping Heather'! I can't believe how many people have joined! Friends, friends of friends, people who have seen me in the paper and on tv...!!
Along with this, she has set up a bank account, so we can now accept cash and cheques that people are offering, and next week online donations should be able to be made.
Chris has also been working hard! Not only supporting me, but he has spoken to his friend, who has organised the domain 'www.helpingheather.co.uk', which should be up and running in the next few days!
I don't think i've forgotton anything......although I have so much going through my head at the moment that it is possible i've missed something important!
Friday, 23 April 2010
As you know i've been waiting 13 weeks for the PCT to make a decision weather or not to fund some treatment i'm waiting for.
The treatment is a trial (CD25), and it would cost the PCT £3000.
They have taken 13 weeks to turn round and say NO, they will not fund it. Their reason..........it's not a licensed drug! Well of course it's bloody not - it's a trial!
The doctor down at the Royal Free has said he will look into the appeals process, but if it took them 13 weeks to decide 'NO', i'm not very hopeful about an appeal.
I have chemotherapy (that I shouldn't have had to start - only on it because it was taking the PCT so long to decide) on Monday, so I think a long chat with the doctors is in order about where we go next.
Im not so sure I can do this waiting thing again - seeing as I have developed multiple new tumours in the 13 weeks ive been waiting!
Thursday, 15 April 2010
I went for my central line on Friday 9th April, after having a lovely time over Easter.
Unfortunately the consultant had decided I have too much swelling in my chest for a central line at the moment, and decided a PICC line would be best.
Well, this wasn't the best idea in my mind, and when the Nurse told me, I nearly started to cry. All I could relate to was remembering the PICC attempt last time - which was 6 attempts to get one in, and then getting phlebitis and an infection, and having the line removed a few days later...lots of pain, bleeding and bruising......I had already decided this wasn't a good option!
Still, I went along with it, keeping my head turned away the whole time. The local anasthetic stung like hell of course, then there was a lot of tugging and pushing. The Nurse announced it had been successful, and he had got it in on the first attempt. I congratulated him, and went of for an x-ray to ensure the line is in the correct place.
Line in place, I went home to await for Monday 12th April - my next chemo session.
As the weekend wore on and my arm was killing - me unable to bend or straighten it properly - I noticed a bruise a few inches lower than the entrance site, half underneath the statlock (device used to keep the PICC line in place - it is stuck to the skin like a plaster).
This bruise continued to develop, and spread a little way up my arm, and is bloody sore.
It looks like (and a nurse also said) that it was a failed attempt at getting the line in - so really it took 2 attempts, but i didn't feel it because of the local anasthetic!
That bruise is now very sore!
Monday 12th April was my 3rd round of Vinblastine. First of all blood was taken as usual, and the PICC entrance site was cleaned, and the dressing changed.
Taking the original dressing off was not pleasant, and ripped a small patch of my skin off - ouch! The cleaning of the area also stung, because of the chemicals used.
Chemotherapy was straight forward and very non-descript. The worst bit was waiting 3 hours for the Doctors as they were running behind!
Side effects this time are limited to being super extra tired! And of course, my arm is in agony, and it's hard to get comfy in bed because of it!
The District Nurses will come every other Monday (the ones when I won't be having Chemo) to flush the PICC line (this ensures it keeps on working).
Monday, 29 March 2010
I spoke to the consultant at the Royal Free on Friday (26th March) - no update - we are STILL waiting for funding from my local PCT.
I also had a meeting with the local Central Advocacy Services on Friday - and i'm hoping they can get in contact with my local PCT and find out whats happening. They agree that the time i've been waiting is too long, and not acceptable. So lets see if we get anywhere!
I had my second dose of Vinblastine today. Once again 4 attempts to get the cannula in - all very painful, and Dr's and Nurses said it would be better if i had a central line, so they have arranged for that to be done on 9th April - a few days before chemotherapy.
It will be my second central line, and i'm quite looking forwards to not being stuck by so many needles every time I have to go to hospital!
I'm in some discomfort with my neck, and I spoke to the Dr today at Christies who said it *could* be where the tumours are shrinking, and coming 'unstuck' from tissues that surround them, but other than that, he didn't offer any other explanation!
Thats about all there is to update for now....!
Friday, 12 March 2010
She agreed it's time they intervened, and they have decided I will be having Vinblastine every 2 weeks, until I get accepted on the trial - then I will stop, and have to be off chemo for a month before I start the trial.
I start next Wednesday.
I've had this drug before, 8 years ago when I first had chemo, but never on it's own.
I've also been put onto steroids again.
I've got multiple new tumours in my neck (both above and below the original ones), and a new one under my arm, just below the original one.
The original one under my arm has grown.
Not sure about the ones in my chest, as they didn't do an x-ray.
Wednesday, 10 March 2010
On Monday had a good day! I went out with a friend to a dog rescue to take some food, then we nipped to Ikea for some lunch and a mooch around.
I then got home, and was sat chatting with Chris on the internet when the phone rang.
It was Fran (Lymphoma Nurse from the Royal Free) with news from my local PCT.
Well, I say news, although i'm not actually sure it is....
The PCT met last Thursday (4th March). Fran called to say that the PCT haven't made a decision, because they need more information. Once they have said information, they will meet again to [try] and make a decision.
What information do they need I hear you ask......I wish I could tell you. I wish the Royal Free could tell me, but in this day and age, the NHS uses snail mail, even when it involves peoples lives.
Chris spoke to Fran yesterday (9th March) with some questions, but unfortunately, she couldn't really answer any. She passed a message onto the consultant down there who phoned Chris today. But he couldn't really answer any questions either. It seems the PCT are like a private little group, who won't disclose anything to anyone - even people who need to know.
So we are no closer about knowing how much longer I will actually have to wait. It could be a few weeks, it could be another 6 till they meet.
I phoned my Lymphoma Nurse at the Christie Hospital yesterday, and today she got one of the consultants to phone me. She said she has read the e-mails from the Royal Free (ohhh, e-mail!), and will write a letter to my local PCT if it will help speed things up (although I am doubtful).
I also asked if I could go down and see someone, as I feel my symptoms have got worse. She also suggested that they may need to 'intervene', and perhaps give me some treatment whilst waiting for a decision to be made by the PCT.
Well, I shall see what Friday brings - if anything.
Wednesday, 3 March 2010
Just under 2 weeks ago I got a letter from Christies. Now - this letter wasn't exactly to me - it was to a Healthcare company, and i'd asked my doctors to write a report about my diagnosis for the company so I can hopefully get some help with costs of travelling, and perhaps some help at home.
I had phoned the Lymphoma Nurse, and she said I could send the forms to her, and she would pass them on - which she did.
I then received a letter, addressed to the healthcare company, but I had been CC'd in on the letter - fair enough you may say, of course you want to know whats being said about you!
Yep, fair enough, apart from what was in the letter. Perhaps it was the way I interpreted what it said?.....
Now I've always been a positive person, believing I'm going to get better, hoping my treatment will be soon, and will help the cancer even though it's grown so much......then I got this letter and it felt like my world had collapsed around me.
A few excerpts from it.....
"She remains PET positive prior to planned autologous transplantation, which is a poor prognosis scenario."
"However the long term outlook here is very uncertain, we are certainly in uncharted territory"
Fine, you might think.......she's not had a good diagnosis!
But apart from the fact the doctors had never spoken like this to me before (apart from the fact i'm PET positive), and the fact the letter wasn't even technically 'to' me made it worse.
I went to my Mums and broke down, and she called up my Lymphoma nurse. The nurse said she had seen the letter and was disgusted, and that if I felt the way I did, then they weren't doing their jobs properly. She went off and spoke with one of the consultants, who said they would phone me.
One of the consultants did phone me - not that I was overly happy with what was said - but am I ever?!
She first told me I had said I wanted to be CC'd into the letter (apparently I'd said it to the Dr who wrote it) - I told her I hadn't even spoken to the doctor who wrote it, to which she replied "Yes, I know". Confused? Me too.
She didn't deny or confirm anything (I don't think they could anyway tbh - as I've not had the latest treatment yet!), but what she said is that my future is uncertain, but they certainly haven't given up on me, but the more treatment Lymphoma has, the harder it is to get rid of.
I spoke to my Psychologist the next day, and as always she helped me to rationalise my thoughts. I did feel easier after speaking to a few people who are close to me, but of course the bad thoughts like to creep in!
On another note - I've had my pain killers changed to Tramadol, which don't seem to make me drowsy like the co-codamol did (ok, drowsy is the wrong word....more like comatosed! I also asked for sleeping tablets, to which my doctor obliged - and they have been helping me actually get more than 2-4 hours sleep a night, but side effects include a banging headache the next morning!
Today is 6 weeks since my appointment at the Royal Free Hospital. I phoned the Lymphoma Nurse up, and they still haven't heard anything. It's getting a bit ridiculous now - as always I feel forgotton, or like it's going to be bad news and I can't have the treatment. The nurse said she will try and chase it up tomorrow, and hopefully I will hear from her - but as always (again!) even though my fingers are crossed, I doubt there will be any news!
Wednesday, 24 February 2010
My sister and brother in law are both taking part - I'm really proud of them, they have started to train - and both aren't very fit, so finding it a challenge.
If you wouldn't mind sponsoring them, it's for a very good cause (Lymphoma Association)
Wednesday, 17 February 2010
For those who don't know me, from my previous entry you know I'm getting worse, and for those who do know me, you'll know I'm getting worse because I think I'm moaning about the pain more.
Anyway - back to the month today......and I've still not received a letter either from Lancashire PCT or from the Royal Free or The Christie[Manchester].
I'd said I'd phone the Lymphoma nurse at the Royal Free if I hadn't heard anything by today - which I hadn't, so I did phone.
I had to leave a message on Frans [Lymphoma Nurse Specialist] answephone. She did phone me back this evening, and asked how I was. Told her I wasn't good (Nurses and Doctors have this effect on me that when they ask how I am I nearly burst out into tears! Had to hold them back!), and that the pain has increased.
She sympathised, but said unfortunately they haven't heard anything from my local PCT.
Fran has already passed the message on to chase it up if possible (she passed the message on to someone on Monday), so keep those fingers crossed that I hear something soon.
Monday, 8 February 2010
I'm getting good at this waiting thing.....waiting in the hospital for an appointment, waiting for chemo to arrive, waiting for results etc etc.
This waiting game is particularly hard because I know the tumours are growing, and causing me more and more discomfort.
It's now been 6 months since I had any chemo, and to me it's getting worrying, it's getting harder to stay positive and keep focused on the good things that i've got.
I've not got marks on my chest in the area of the tumours, a rash (not visible)on my arms, my collar bone has a swelling over it again. The tumour under my arm seems to have grown rapidly, and quite large, as I have a visible lump, and i'm still in pain.
The past week has been a bad week for pain.
Since the pain started at the end of October 2009 it got very bad, then subsided, and I even got a few days earlier this year with no pain, but at the moment it's getting to 'very bad' again.
Im reluctant to take co-codamol because of the way it knocks me out, and takes away my 'normal' quality of life - I sleep a lot, don't wake up even if the phone rings next to me, can't drive, slur my words.......
I received a reply from St Marys in Manchester with regards to my complain. Needless to say the letter is full of crap, saying things I was supposedly told....which if I was, I wouldn't have needed to put a complaint in.
So this weeks task is to write a reply and get it sent off - whilst still checking my postbox every day for a letter from Lancashire PCT.
Fingers crossed that the letter comes soon, and their decision is that I can have the treatment down at the Royal Free.....
Thursday, 21 January 2010
We drove down, parked the car in Brent Cross Shopping Centre, and caught the tube to the station nearest the hospital. Arrived at the correct clinic ontime, and was seen by Fran the Lymphoma Clinical Nurse, who is in charge of the trial with the Dr.
She told us a little more about the treatment, how it works, and whats involved with the treatment, recovery times, side effets, the logistics of the treatment, expectations etc.
I then had to go for blood to be taken to get 'normal' blood results, but also to test my blood for mouse antibodies, because apparently the drug originally comes from mouse antibodies!
We then met Dr Christopher Macnamara who didn't really have much to say for himself!
He explained the wait now is for funding from my local PCT, then I will need some tests doing (Heart scan, PET scan and bone barrow biopsy), then hopefully (if funding is granted) I will be having treatment in 3-6 weeks. (Fingers crossed please).
After we had met the Doctor, I went up to the 'lead lined room' to say hello to a fellow patient, undergoing the treatment I will be having! We have been talking on the Macmillan website, and it was nice to put a face to a name and have a little chat! (had to be little as I was stood behind a lead screen, and they don't allow you to be there for more than about 25 mins!).
I then had to go to the Pharmacy and get a prescription for some drugs that will block the radiation from my thyroid when I have the treatment.
After that, we headed back to Brent Cross Shopping centre on the tube. I did a little bit of shopping, we ate some food, then headed back to the motorway for the mammoth drive home!
Sunday, 17 January 2010
Thursday, 14 January 2010
By the evening I was just stating to ache, but didn't need any pain killers during the day.
This has carried on every day since then!
Bliss was short lived, because of course, I still have to suffer in another way...I've developed a small red rash on my chest, and also a chesty cough, cold and sore throat!
Today (14th Jan) was Hospice Day. I saw the Doctor, and mentioned that I still haven't heard from the Royal Free hospital about my impending treatment there.
The Doctor said I should try and chase it up (again), and if I had no luck, phone the hospice and they would try. I also had an appointment with the Psychologist, who told me to phone my Lymphoma Clinical Nurse as I might have more luck that way!
So, I got home from the Hospice, and left a message for Jane (LCN). I wasn't actually expecting a phonecall back until tomorrow, but she was very good, and got back to me shortly after I left the message.
After explaining why I was calling, she promised to go and find Adam (One of the Doctors who deals with clinical trials), and get back to me.
Once again, she got back to me quickly, and explained that no one had heard from the Royal Free, so they had sent them and e-mail, and she would phone me back before 6pm, regardless of if the RF had been in touch.
True to her word, she phoned me back again, and informed me an appointment has been made at Christies for me on Monday morning. They will check me over, and hopefully have an update on the Royal Free situation! Fingers crossed....
Wednesday, 6 January 2010
Well i've had a lovely x-mas. But this bloody cancer is always in the back of my mind. I'm back on pain killers, as the pain is becoming unbarable. I've tried not to complain when i'm around people, as I feel i'm bringing them down too.
The swelling over my right clavicle is back, and as big as ever, and the lump under my arm has grown and aches.
My chest is the worst (where the pain is). I can guarentee the tumours will have grown, as I am even sore to the touch now :(
Still not heard from London about the trial, and I am getting worried as the pain is increasing, and I really need some sort of treatment before it all gets out of hand.
I phoned Christies to chase the London appointment up, but was told by my consultants secretary that the Secretary in London is away until 11th January, so I probably won't hear anything until after then - which goes against what my Doctors said about being treated in the first few weeks of January.
I'm trying my hardest not to get depressed, and I think i've just about made myself 'numb' about the cancer around people now. But this is the first time on my own for quite a few days, and it's all coming down on me now.
Daycare at the hospice has been closed over x-mas, so i've had no one to talk to about it there, and haven't seen the doctor either.
I'm actually starting to get scared for the first time.
It's been so long since any treatment (August), and the Drs know all my tumours are growing......
I'll just keep plodding on as usual, being strong (but in pain!)
I've been treated like crap today, and still got the news I didn't want to hear:(
I had my appointment at St Marys in Manchester at 9:30.
Me and my Mum set off at 8am, leaving 1 1/2 hours to get there.
We got stuck in bad traffic, so made a call to the department in the hospital to tell them we were nearly there, but would be 20 mins late. The receptionist said that was ok, she would let the Dr know.
About 2 mins later my phone rang, so Mum answered it, and it was the receptionist again, saying the Dr would not see me because I was late, and she had to leave. And that she'd had to fit someone else into my appointment slot?!?!
Mum asked what time she had to leave, and she was told 12pm!!!! That was over 2 hours away.
The receptionist said no, sorry, the Dr has said she wont see you.
So of course Mum gave her a mouthful, and I burt out into tears.
We came home, me crying all the way, and I rang them when we got home.
I asked what was going to happen now, and I also I told the receptionist that the Dr was unprofessional, and had no feelings.
The Dr was 20 mins late to turn up to my first appointment, and didn't call to let me know, so at least I was being polite and letting them know.
She said she couldn't speak to the Dr now, and would have to wait till she finished clinic.
About 10 mins later my phone rang....it was the Sister from that department.
She said "Ohh, I believe you couldn't make your appointment."
I said "Yes, I could make my appointment, but because I was polite and called to say I would be late, I was told not to come, as the Dr wouldn't see me"
The nurse then told me a different reason to the receptionist - that the Dr had an appointment in the afternoon, so couldn't fit me in!
Anyway, she said the Dr has my results, and has dictated a letter, but it's not been sent out yet.
Unfortunately i'm not suitable for IVF. I was told one of my hormones is very low, and the other is very high, which makes me unsuitable
I am suitable for egg donation, but obviously thats not going to be soon.
The nurse was quite cold on the phone, and didn't even give me chance to ask any questions.
I don't even know if that actually means I am infertile.
But needless to say i'm feeling pretty damn devastated.
Well, it's results day tomorrow. I finished chemo in about August. I had a CT and a PET scan in September, and got the results, which werent great.
Even though I was PET positive, and one tumour had grown, they decided to leave me till the end of November, when I would have another scan. (30th November).
Now to me...when the cancer has grown whilst i've been on chemo....it's most likely going to grow in the time i've NOT had any treatment - which is nearly 3 months! (I know that isn't always the case, but thats how I see it)
I've been having lots of pain, and the Dr at the hospice I go to tried to get my scan brought forwards, but my consultant & secretary ignored my request, and ignored the Hospice Dr's calls and faxs - I'm really miffed at this, as my consultants are always telling me if you have a problem, ring us, and we'll bring your appointment forward etc.
Well, I had my CT scan on 30th November, and the results are tomorrow. We've had one good piece of news, which is that my sister is a good match for my Stem Cells, so when I'm eventually well enough to have my transplant, she will be the donor.
The dr's have said I need to be in remission before I have the SCT, but they just don't know how to get me there :(
Lets hope tomorrow brings some good news.....
7th December - Results Day
The tumours in my chest and neck have 'only' grown slightly.
The one under my arm has grown a little more, and it now 2.5cm.
I've been waiting for test results to check for a 'cell marker' called CD25. I've found out today that I have this cell, which means I have been accepted onto a trial at The Royal Free Hospital in Hampstead - which is along way from us!
I will be having a treatment called Basiliximab - which is like radiotherapy, but administered through a drip, and only attacks the 'CD25' cell marker, so won't damage other cells (Hope this makes sense!).
I will be in hospital for about a week, and stuck in a room as I will be radioactive!
In the mean time my fertility results are next Monday.
Also, today they have taken my Hickman line out.
It's not been used since August, and is just an infection risk!
They have to cut part of it out, so i've come home nursing 2 stitches, and the local anasthetic is wearing off, and it's rather tender!!!
I had to go back to Christies today for another CT scan, on my lungs/chest because of the pain i've been in.
The entrance site to my line was fine, no redness, no soreness, no swelling.
The pain was intermittant, sometimes a cramping feeling. It hurt more when I extended my right arm, and absolutely killed when I laughed
It came on at random times and takes my breath away a little bit. To the touch it feels sore like bruising.
I took some paracetamol, and it reduced the pain only a *tiny* bit.
I've been getting pain in my chest for a couple of days, so rang Christies who told me to go to my local A&E.
Off I trundle to Preston Hospital.
I had an x-ray, ECG, blood test, but it showed nothing.
Doctors think it's either the tumour pressing on something, or musculoskeletal pain, but can't explain how or why I would be experiencing this!
Been told to rest, and been given Co-Codamol for the pain.
Still having the pain, but it's there all the time.
Co-codamol only taking the edge off. In absolte agony when I move - changing the gears in the car kills, I can't lay down/get up without help.
I go to the hospice once a week, and asked to see the Dr.
He examined me and checked the report from the hospital from the previous week. Stupid incompetant hospital didn't even put the x-ray on the system, but put notes on, saying they 'found' enlarged lymph nodes in my chest. Baring in mind I told the A&E Dr multiple times I had lymphoma in my chest, and he also read my notes.
My bloods were fine, and my white blood count nearly back to normal.
My line is still in the right place, and no infection etc.
Dr at hospice still not 100% sure what it is. He thinks it could be inflamation of the cartilidge inbetween ribs, but can't understand what could have caused this.
The other thing it could be is the tumours pressing or something, but can't determine this with just an x-ray.
He also prescribed Diclofenac aswell as the co-codamol.
I've got a CT scan booked for 30th November and seeing consultant on 7th Dec. Dr at hospice asked me to phone and try and bring these forward.
So on Friday I phoned, but was told "We can't just bring a scan forward for no reason".
So I phoned the hospice back, and the Dr was hopefully going to fax my consultants secretary to ask to bring them forwards.
Had a phonecall today that i've been waiting for this morning.......
St Marys hospital (Reproduction/fertility) phoned me, and I have an appointment on Monday!
Not even sure if I am fertile, but hopefully they will say they can test me, and if I am, harvest some eggs and freeze them!
Theres only about a 10% chance I am actually fertile because of all the chemo.
And theres only a very small chance that eggs can be unfrozen and I will fall pregnant in the future, but it's worth a try!
On the pain front, been in pain for 2 weeks now.
Saw the doctor at the hospice yesterday, who has added another pain killer/anti inflamitry, so hopefully this will help.
The doctor also wants me to phone Christies to try and bring my scan an appointment forwards, as he's not 100% sure if it's inflammation, or maybe the tumours growing, or putting pressure on me!
My sister and Brother-In-Law took me for my appointment.
I'm not eligable for 2 of the trials (including ReACH), as i'm not yet in remission.
The Basiliximab trial is coming to Manchester sometimes in 2010, but we still don't know if I am able to have this, as results aren't back yet.
I need another scan in 6 weeks, then back to see the doctor a week after.
The docs brought my CT and PET scans forward, which I had nearly a fortnight ago.
I was supposed to go and see the doctor about the STC (Stem Cell Transplant) last week, but I got a phonecall cancelling it - of course no one would say if it was good or bad news on the phone.
I already had an appointment for today, so off we went this morning....
Unfortunately today's appointment was mainly bad news, not good news.
My PET scan showed up positive cancer cells - which means all my cancer is still 'active'.
The tumours in my chest and neck have shrank - which is good, but they are still active.
The tumour under my arm has grown by 17%.
My cancer has (in simple terms) become 'immune' to the chemo regeime I was having.
The docs have said no more chemo because it's obviously not working - this is because it is a relapse, so the cancer has got used to the drugs.
My transplant (STC) I was going to have has been cancelled.
I will still be having a transplant, but it will be from a donor, and won't be for at least a few months. (They will test my Sister to see if she is a match)
I will be put under a clinical called 'ReACH' (Reduced Intensity Allografting for Chemosensitive Hodgkin Lymphoma).
Unfortunately this hasn't opened yet, so I have to wait for it to open, whch will hopefully be at the end of this year/start of next year.
I have to go back to hospital in a month to see if anything has 'grown'. If it has, and if my cancer contains a particular cell (CD25) then I am hopfully eligable for a type of immunotherapy treatment, called Basiliximab, but I will have to travel to London for it, as the hospitals up here don't do it at the moment.
Went for 5th chemo this morning........and been sent home!
They dont want to do anymore!
I have to have a CT and a PET scan, and then hopefully bring the date of my transplant forwards!
Theres a slim chance I might need 1 more chemo in 3 weeks, but probably not!
Went to Christies on Monday for my 4th chemo.
First I had blood taken, and my stitch taken out - so now my line doesn't need to be dressed anymore, and I can shower normally!
I saw my consultant, and discussed side effects........and I have been taken off one of the chemo drugs, called Vincristine.
After the last chemo I developed numbness and pins & needles in both arms and legs - and i've now had it for 3 1/2 weeks.
Because I had the same drug 7 years ago, the doctors have stopped it, otherwise the damage to my nerves could become permanent.
I'm feeling pretty sick and weak, and have had a massive headache.
I'm also on nightly injections of something called G-CSF (Granulocyte colony-stimulating factor).
It stimulates the bone marrow to produce stem cells, and release them into the blood.
I'm having these for 10 nights, then on the 27th August I go back to Christies and have a blood test, and hopefully will have my stem-cells harvested - if there are enough!
28th August - Stem Cell Collection
It was a long day - I had to arrive early for a blood test.
First they needed to see if I had enough white blood cells, when they found I had, we had to wait for results which were a 'prediction' to how many stem cells I had in my blood.
Both results were positive, so we went ahead with the harvesting.
I was hooked up to a machine - blood coming out of my arm, through the machine, and back into my body through my central line.
The machine would process all the blood in my body 2 1/2 times, but only about 200ml would be out of my body at once - which is why it takes about 4 1/2 hours!
At the same time as taking the blood, they add an anti-coagulant, so the blood doesn't thicken/clot, and when this goes back into your body it strips you of calcium, which can make you feel a bit sick/tingly - this happened to me, so they gave me a drip with calcium in.
I had that done, and they said they would call me within about 1 or 2 hours and let me know the results.
If they could not collect enough that day, I should return the next day for them to try again.
On the way home from the hospital I got the phonecall - They needed to collect 2 million stem cells per kilo of my body weight.
Great news........they collected 4.2 million cells per kilo of my body weight .
She says i'm handling the illness really well, and all I need help with is my tablet taking. I'll be seeing her approx every 3 weeks (at the hospice where I go to day care), for cognitive therapy, as she says I have a phobia - which is true now I think about it!
Daycare on Thursday was good, I had my hair cut a little shorter (it's just above my shoulders now), as it's still falling out, I had some reflexology, I made a card for my Mum, and made some more friends!
22nd July was my appointment with 'Dr Bloor', the 'Blood Doctor'.
He explained why they do the Stem Cell Transplant, and why it will be a good thing for me to have it.
He said I will be in hospital for around a month when they do it, and I will grow to hate him, cos it really does make you feel crap when you have the high dose chemo.
After I am out, it will then take me a few months to recover.
They are hoping to harvest my stem cells around 10th August, hopefully it will only take 1 session, but it can take up to 3. It takes about 4 hours to harvest them.
I had my Central Line put in today, then went for chemo. This all went ok, the line went in fine, didn't hurt, although my neck was a little stiff from keeping my head to the side for 45 mins!
Felt sick, and had a raised temperature, so rang Christies, who told me to go to my nearest A&E.
They decided to keep me in......refused to use my central line, and instead took 7 attempts at taking blood (one from my groin!!!) and getting a cannula in!
Doctor has said I need an x-ray, and some swabs taken from my central line, to check for infection.
Doctor seemed to forget she had said this, and absolutely nothing was done today.
x-ray this morning, and the cultures this evening - the doctor had forgotton about me (she admitted to this).
After they took blood from my line - she refused to flush it, saying it didn't need to! This line goes into my heart - it needs flushing! Eventually she said she would send a nurse to flush it - this happened about 7 hours later, and the blood in my line had already started to clot!
The nurse also re-dressed my wounds from the central line (1 exit site where the line is, and one wound with a stitch on my neck).
She has used dressings that are used when you have a cannula in your arm!
I had to tell her how to place the line (It has to have a loop in it). It's also supposed to have a waterproof dressing on - not a small plaster thing for a cannula!
Good job the district nurse is coming on Monday - but also means I can't have a shower cos the dressing is split in 2 (on purpose), and the split is right over where the wound is!!
Can you tell I didn't have a nice stay yet....?.....
Luckily I was put in a side room - not so lucky they leave the 'night light' on all night......I called it the 'bright light'
Also, not so lucky for me, the man in the next room was dying.......and the rooms have paper thin walls.
Although I did feel really sorry for the guy.......it wasn't nice for me - he slept most of the day, and was awake all night - coughing, choking, shouting, being abusive to nurses...........he was shouting the same thing for about 10 mins, then went on to shout something else "Nurse, Nurse, Nurse" "I'm hungry, i'm hungry, i'm hungry"...etc......
I got 3 hours sleep at night
The conclusion of what was wrong with me.......NOTHING.
I had a high temperature, and they gave me antibiotics just in case.
Just glad to be back home, my Puppyhas missed me!!
Long day at hospital...8:30 till 4:30pm.
I had chemo through the PICC, then it was removed - painlessly, but boy was it a relief! I can actually move my arm (ok, it's a tad sore!)
Booked in to have a central line on the day of my next chemo, and hopefully this will be done properly, and last until the end of treatment.
Met with the doctor first, he asked me how I was, agreed to give me more anti sickness, and said the dexamethasone steroids were a go-ahead. Got some sad news.......after the Stem cell transplant, there will only be a very slim (5% max) chance I will be able to conceive. Quite a blow.
The doc and I talked about freezing eggs, but there is such a small chance of them being defrosted, and also i'm already not a good candidate because i've had chemo previously.
He is going to speak to a specialist who's doing research on lymphoma and fertility, to see if I have any options.
Anyway, my bloods were ok, so on with the chemo. Felt crap, had the rubbish side effects, but tried to sleep through it, and slept on the way home.
Doctor also discussed the Stem cell transplant.....I will have my Stem cells harvested after 3rd or 4th chemo probably.
After my last (6th) chemo, I will have about a 6 week break (if eggs are not going to be harvested), then I will be admitted to hospital for a chemo called BEAM.
I will have that for a week, and then have my stem cells back. I will be in isolation quite a bit, so no visitors!
Will be in hospital anything from 2-5 weeks, depending on recovery!
My bruise from the failed PICC attempts
The PICC that worked is JUST under where I bend my arm - normally they are a lot higher.
It's very uncomfortable and sore, and still hasn't stopped bleeding where it was cut with the scalpel.
To top it off, the Sister said my veins are too thin, and this PICC line will not last. She thinks I need a central line, and says I need to speak to my doc on Monday when I go for chemo, and ask that I have a central line 2 weeks after chemo. If they agree, this PICC line can be taken out as soon as chemo is finished.
I started the day feeling great, but now i'm battered and very bruised, cant move my arm properly, and pretty sure i'm still bleeding slightly.
9:45pm (Day of PICC insertion)
Phoned the hospital emergency line a couple of hours ago, told them it was still bleeding, she said to keep my eye on it, and call back in an hour.
I called back an hour later, as it's still bleeding, and she said not to worry, it sounds normal.
She said if I am worried, go to my local walk in centre and have a nurse change it.
Great, but theres no walk in centre local to me
Don't want to bother people at A&E, so will wait till tomorrow and call docs in the morning to see if I can get an appointment with a nurse for a dressing change.
Picture of the PICC Line (With dressing) DO NOT click if you are squemish!
Ok, the bit where the blood is...is supposed to be a small blue line going into my skin.
The reason the blood hasn't soaked onto the gauze that you can see is because the dressings are layered.
It goes PICC line and statlock (white thing with blue writing - holds tube in place) - dressing - tube with end wrapped in gauze (so it doesnt rub) - dressing - dressing.
The blood has soaked onto the underside of the statlock, which is about an inch lower than the entrance site.
It's all covered so can't leak anywhere and I feel a bit calmer now, so i'll wait till tomorrow and try and see the nurse at my surgery.
4th July 2:46am - Currently laying in a hospital bed, fully clothed listening to everyone snoring. Only came for (another) dressing change as I was still bleeding so didnt bring an overnight bag. I have phlebitis in my arm, doc is worried I might get cellulitus, and i am still bleeding! Got here at 11pm, and they only just decided to keep me in. Got to have antibiotics and be reviewed in the morning!
Discharged about 1pm.
Got about 4 hours of broken sleep.....the snoring didn't stop.
Had 1 1/2 slices of cold soggy toast for breakfast......!
Had my arm cleaned and dressed last night, and AGAIN this morning, and it's STILL bleeding.
It's not going to heal, because it's in the crook of my arm, every time I move my arm the line moves in and out, which is painful.
My arm is seizing up and quite painful because i'm having to hold it in a certain position. Got a hot pack on at the moment to try and help.
After chemo on Monday, i'm making them take it out, I deffinately cant deal with it any longer.
I was told I had stage 1 Hodgkins Disease, with tumours in my chest (same place as last time), and small tumours in my neck. The one in my chest was measured at about 10x6cm - smaller than last time.
Bone marrow biopsy was planned, and chemo was to start on 16th June.
I was also told I needed another PET CT scan, and an ultra-sound scan on the swelling on my collar bone - to check for blood clots.
I was also started on daily warferin injections, just incase there was any blood clots.
After a few injections by the nurse, I learnt to do the warfarin injections myself.
The long term plan is 6 sessions of chemo, then to aim for a stem cell transplant.
4th June was 'Bone Marrow Biopsy' day. I knew what to expect, as I had one years ago, but still asked to be sedated, as I know it hurts!
The took 3 samples of bone marrow....
The 1st was an 'aspiration' (they take a liquid form of bone marrow).
The 2nd was a 'Trephine' (they take a solid piece of bone marrow, about 2cm long).
And the 3rd 'Cytogenic' (when they take the fluid, like in the aspiration, but this one studies the abnormalities in chromosomes).
Ultra Sound was on 5th June - luckily no blood clots, but the tumours in my neck were apparently pressing on my veins, which could be causing the swelling.
15th June was PET scan day.
The week before I had 5" cut off my long hair, as I was told my hair will all fall out (again).
Feeling Numb at this point, more than anything. I didn't feel upset or worried, just wanted to get the next week over, and find out what side effects I would suffer with from the Chemo.
16th June was chemo day.... I was to have a chemotherapy called 'GDCVP'.
My appointment was at 9am, and I arrived on time, and no one at the reception desk knew I was supposed to be there.........she went to see the nurses, who luckily were expecting me.
By 9:30 we were still sitting in the waiting area.....hadn't even had any bloods taken.
My Mum asked what was going on, and they decided to put me in a room. They said my chemo hadn't arrived yet, and would be there between 10:30 and 10:45.......
it arrived at 12 noon.
I started having it, and had a few reactions, so had to have the drugs given slower, and I slept for about an hour, they made me feel so bad. Another drug made me feel like I had a cold, my nose was blocked.
We left the hospital at 2:45, with a bag full of drugs.
I Got home and went straight to bed as I felt so weak.
I got up about 6pm, and have had to take an anti-sickness pill, and already fought away a massive sickness urge.
18th June - Not doing so well. I have some psychological problems with taking tablets, and it's really taking its toll on me.
Got very depressed last night and this morning, spent a lot of time crying. Just about managing to eat and drink, but lost 5lbs already.
The anti-sickness is only just taking the egde off, my whole body is aching, and i'm just so exhausted.
To top it off, the hospital phoned yesterday and said they won't give me a sick note, as i'm 'only' an outpatient.
My Mum phoned my GP for me, and spoke to a receptionist, who was really nice and she has gotten me a sick note for a month. She says I do need to see my GP to get a longer one though.
28th June - It's nearly 2 weeks since my 1st chemo....not been coping too well.
The first week was bad, I was very depressed, and struggled to take my tablets.
This week, the first few days were ok, I felt quite good, and i've had a day out in Clitheroe, and today my Mum took me to Southport for my lunch.
I've seen a palliative care nurse, who was absolutely lovely, and has answered a lot of my questions, and she's going to try and help me with a few issues. She's suggested I ask for my steroids to be changed to dexamethasone, as it's less tablets, and they don't cause depression like prednislone do.
She's also suggested a sryinge drive for my anti-sicknes,, instead of more tablets.
She's also signing me up to day care once a week at the local hospice, which I am looking forward to.
I will get transport there & back, get a meal, and can do whatever I want while i'm there....they do massages, have a hair dresser, have beautiful gardens.......and she says there are some ladies who are a scream, and judging by my sense of humour, we should get on.
The nurse is also going to visit me the week I have my chemo, when i'm generally at my lowest, which is nice.
She's also going to try and get me some sort of 'hypnotherapy' to help with taking my tablets, and it's such a struggle, it takes me hours - there is a lady who does it at the hospice.
I'm at hospital tomorrow for review - they check bloods, ask questions, I can ask questions etc, and sometimes they do an x-ray to check things.
I also think my hair is starting to fall out.....had a few clumps today, but nothing major....oh well.
One more week till next chemo....great
29th June - Check-up at Christies.
Think the doc was annoyed with all my questions!!
I got the prednislone changed to Dexamethasone - which is less tablets, and also will *hopefully* not make me as depressed.
I also asked for a central or picc line, and i'm allowed a PICC Line, which will be fitted shortly.
This put more worries in my mind - i'd never had an operation before!
Off I went to the appointment, which was pretty uneventful.......just 3 doctors feeling my lumps!
I then received a letter with 2 appointments......23rd April for a 'Pre'Op Check', and 27th April for the 'Op'.
At the 'Pre-Op' I decided I was going to ask lots of questions, as I was quiter nervous about having an operation!
At the appointment hey took blood, weighed me, did an ECG, and an MRSA test.
The nurse couldnt answer any of my questions, cos she didn't know the answers! - This didn't put much faith in me!
She didn't know how long I would be in, so told me to take an overnight bag 'just in case'.
I arrived at the hospital in Manchester at 7:30am, after being starved from 9pm the night before....I was told they wouldn't be operating until late afternoon! I wasn't very pleased, and begged them to bring the op forward, as it also wasn't fair on my Mum having to wait around, not knowing when I would be going down, and it was a long drive back home - she didn't want to go home, and have to drive back up to pick me up!
The actual surgery didn't take long - about 20 mins. I cried just before they put me under!
I remember waking up in the 'recovery room', and crying, then apologising to the nurses for crying! I then fell back to sleep for a while, before being taken back to my room.
As soon as I saw my Mum, I started crying again! I was told the anasthetic can have this effect (or I'm just soft!)
The cut was only a few inches long, and glued - which meant I wouldn't have to have any stitches removed! And luckily they let me home that night, with painkillers!
The first night, I was in absolute agony, even with pain killers! I could hardly move my head.
On 12th May, I had another appointment with the surgeon, to check the wound. He told me that they hadn't actually removed any lymph nodes - just taken biopsies. I was also told that they had found low-grade lymphoma, but still needed to do more tests before telling me my treatment plan.