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, 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.
February 2009, I was enjoying a holiday in Egypt. One morning I was putting on my suncream, and noticed a lump in the right side of my neck.
I just knew what it was straight away. I didn't want to worry my Mum who was back at home, so I waited until I got home to tell her.
I also made an appointment at my doctors (which is what I had always been told to do if I was worried).
At the appointment, the doctor had a look at my neck, and felt the lump, and told me not to worry, it was probably the remains of an infection. She told me to give it 2 weeks, and come back if it was still there. I knew she was wrong though.
A few weeks later, I had my 'annual MOT' at the Christie Hospital anyway, so decided to wait until I saw the doctor there.
In the mean time, I started to develop a swelling over my collar bone on my right hand side.
At my appointment in March, I had an x-ray, which came back as abnormal.
The Doctor wasn't too hopeful either, and bluntly told me the cancer has returned, and I needed a CT scan to find out the extent of the disease.
I had a large mass in my chest (right lung cavity), that measured approx 10x19 cm.
It was a shock to us all, because i'd always been pretty healthy, and the only symptoms that i'd had was a cough, and shortness of breath.
I underwent various tests, and finally a course of treatment was decided - I was to have 6 treatments (lasting 6 months in total) of a very strong chemotherapy, called 'Frontal Hybrid', or 'ChIVPP/EVA' (which is the initials for the drugs I had).
It seemed to do the trick - although making me very ill. I lost a lot of weight, was sick a lot, lost all my hair, picked up numerous infections, and had a lot of blood transfusions, and a few months after the end, (March 2003)I had 15 days of Radiotherapy - which was a complete breeze compared to the chemo!
CT scans showed the tumour had shrunk considerably, and over time, I was told I was in remission, and I slowly got on with my life, trying to get it back to normal (whatever that is!).