Okay, I had a "routine" CT scan in December only to find that there was in fact still a "mass" there in my chest that they'd managed to miss in the June mid-chemo CT scan. It measures about 2cm so I suppose it would be easy enough to miss what with all the other stuff in the body...

They don't know whether it is scar tissue or dead tissue or tumour. I had another scan in march and there was "no noticeable change" from the Dec one which is good as the tumour was aggressive therefore IF the 2cm WAS tumour, they would've expected it to grow. I was maybe going to have a more detailed scan (called a PET scan) which shows dead/live tissue better...but they decided another CT scan in June would be better. Thjat way they can compare the Dec and June scans and be pretty certain if there's no growth that it isn't tumour. Phew!

Don't know how I feel about it all. In a way it is nicer not knowing for sure. I don't know what I;d think if it turns out to be tumour...I guess I'll cross that bridge if i come to it.

Someone said something the other day about losing their innocence about something. I guess that is how I feel about life. The innocent part of me that believed i would be here until my ripe old 80s died last March, along with a lot of my old assumptions. Now I am thankful for every milestone of my children's lives I see. Each new task mastered (Beth learned to swim without armbands last week and Liam got a certificate at Beavers) is an honour for me to witness...It certainly changes your outlook on life...

Better go seize the day! S

01/07/2004

I just received a lovely big bunch of flowers (thank you Joan) from euan's auntie...and when speaking to her she mentioned reading this diary for updates. Now i fell a bit guilty for not updating more often:

I have been okay this week. Well I say okay, but really the steroids are horrible...they make me feel hungry but queasy and i really hate taking them. Then when the steroids stop I begin to get my "chemo-throat" where the cells in my throat get sluiced away leaving my throat a bit tender and my tastebuds all funny (a kind of sour taste in my mouth) and this week i have also has a sore eye...my eyelashes are almost non-existent and my brows are pretty sparse too.

Now you can all see why i don't update here: I'd moan far too much!!!Honestly though, i am OKAY...this is situation normal for post-chemo and by next week when i feel normal and healthy, this all pales into insignificance.

We're getting work done on the garage now and the architect has begun the plans for the extension. It's nice to have these future projects started upon. I will need the house decorated and changed as i have such bad assiciations with some of the (normal everyday) smells here now. In fact I threatened to move house the other night!!!

The kids are looking forward to their holiday next week..I have been making plans to keep busy so that I don't panic about them too much. I think we're going down to the lakes too on the Thursday and then going to have the weekend there with the kids at my Godmother's cottage.

XXX I WILL write again soon.

23/06/2004

I saw my Dr today for my scan result. After 4 out of my 6 chemo sessions, the scan is showing no tumour. This is obvioulsy good news for me! I will still complete the last 2 sessions of chemo...but it may mean I won't need radiotherapy at the end...(maybe will though)

We're very pleased, and thankful...

Thank you all for your continuing support,

14/06/2004

Oh dear, I haven;t updated this for AGES!!!

Number 4 went okay, although i was dreading it. I was only sick twice, 24 hours apart...and felt queasy for most of the weekend. Apart from that I've been fine. We were busy this weekend; our for dinner friday and then a BBQ for a friend's 40th saturday.

I have my scan on Friday(18th) and should hear about the result the following week. It is also beth's birthday on sunday and she's having a party for her wee friends on the 17th and then family stuff over the weekend...So a busy time planned for then too.

22/05/2004

This week has gone fine. I was really tired suddenly on friday afternoon and had to phone my Mum to collect Liam from school. After an hours sleep i felt a bit better. Maybe it was just because my bloodcount falls around 1 week after the chemo...I don't know though.

The kids stayed at Mums last night, and Euan and I had a long-lie. He woke me with breakfast at 11.50!!! I think I would've slept all day left to my own devices!!! I then had a brief introduction to my friends new baby whom she is adopting and gets for good on tuesday...he is a real cutie and Bethany and I will have fun visiting him through the week from now on!! I love having babies to cuddle...and give back!!!

Bethany's wee freind is away on holiday at the moment, halfway through her 2 weeks now. Beth has been missing her, and bought two necklaces with "best" and "friend" on them...one each for them to share! Awwww how cute!!

Euan cooked tea for mys sister maura and I...so we were good on our diets today. She keeps getting "Slimmer of the week" though, GRRRRR!

Still no date for the scan, I think I'll phone them next week and chase it up...

14/05/2004

i had my 3rd chemo yesterday and found out I will have 6 in total. They want to do a scan before the 4th, but feel that even if it is clear (which they doubt) it would be safest to do the 6 and have a lower dose of radiotherapy to avoid the risk of breast cancer later on in life with me being young.

The 3rd dose was better in terms of side-effects as I was only sick once and felt better by night time and haven't felt ill today, but i am beginning to have really bad negative feelings about the treatments beforehand and felt really quite down about it all on the wednesday night: dreading it. I guess that's normal though: building up a negative association with the treatments.

06/05/2004

I feel bad I haven't updated in awhile...but the truth is there's not much to say. I have been fine these past few weeks and my bloodcount was fine today for chemo # 3 to go ahead next Thursday. the only "bad" news is I will probably not get a scan until after the 4th chemo. I don't know for sure, but think I may have misheard Dr Rogers telling me it would be after 3...Wishfull thinking perhaps?

My hair is falling out for real now. Well the stubble is anyway...so I am glad I went for the shave. I certainly don't need to shave elsewhere (Legs and underarms, no rude thoughts please!) either these days. (Is that WAAAY too much information for you guys? )

The kids are booked to go for 5 days to centreparcs in the Lake district with Granny and Grandad (my in-laws) in July. So I may well get a few days away too...or a few days peace and quiet.

I've been going to Slimming world with my sister. I decided I was fed up being the fattest chemo-patient ever. I've lost 6 pounds in 2 weeks so am hoping to be able to fit into my summer clothes when (IF?) we get nice weather.

23/04/2004

I had my 2nd dose of chemo yesterday (22nd) and it went well. I was finished faster, as the first part of the treatment prior to the chemo went in faster this time with no reaction, so I was home by 3pm.

I have better anti-sickness tablets this time, and took one at 3,30. I then slept on and off. I was sick at 7, 8 and 9pm (ish) and then slept all night. I haven;t felt sick today at all, just incredibly tired. So all in all this is better 2nd time round.

16/04/2004

I shaved my hair off last night. Well Euan did actually! It had begun to fall out: nothing major, but a few strands at a time and one kinda chunky bit...I was worried about how I'd cope if it all fell out after the chemo next week when i felt low or ill. I thought it might depress me too much. There was also an element of control there too: my hair falling out would signal a loss of control and although I have no control over the fact it would fall out, I could control WHEN if I got in first.

It looks okay, and feels like a fuzzy-felt board! LOL The kids have been fine about it (baldy! said Liam) and I am okay about it too. My hair was never my "Crowning Glory" really...I am still holding out for curly dark hair at the end of all this (think Julianna Marguiles from ER!) so fingers crossed for me.

XXX

Sinead

PS Hi to all my relatives and friends who are now reading this as a way of keeping up-to-date!!!

13/04/2004

The easter weekend was fine. I kept anticipating a "low" but didn't experience one thankfully. My white blood cell count should be around its lowest now...and I'll get a bloodtest on friday to check it is going up again before getting chemo on the 22nd...

My hair is still present, no signs of it falling out yet. I am beginning to wonder just how calm I'll be when it happens though. I have a feeling I will want to very privately shave my own head as best i can and let Euan perhaps do the rest. I keep being very flippant about it all, but really i think that's just because there's nothing i can do to prevent it so i may as well face it head on (excuse the pun!!!)

I am eating like an 8-month pregnant woman at the moment. I keep blaming the steroids, but really i think it's just me! At this rate I will be the only person to GAIN weight through having cancer!!!Once the easter eggs are finished I may have to consider cutting down...

Liam was away at legoland with Auntie Maura and Uncle Gordon this weekend which was fun for him, but strange for us. Bethany missed him a lot...and i did too!!!

XXXX

Sinead

07/04/2004

POSTED AT 2.15 AM...

Having a "steroid-fueled" late night...so I was looking back over the past week of ukp and found the message for me here last thursday (the day of my Chemo) Thanks rancon, and everyone else too. That means a lot to me, although I obviously didn't get to read it then...

I'm about to go and update the diary, but as it takes a few days to go live it's difficult not to share things here and then repeat them in the Diary (fiona, if i promise not to swear can I be excused? LOL)...but here's the jist/gist of the past few days: the nausea stopped on Monday lunchtimeish...but the past few nights I've been wide awake until 2-3am due to the steroids. I at least put my time to good use tonight: writing my letter of complaint to one of the GPs at my practice and tidying, and catching up on ukp...

The tumour is already smaller: no I haven't developed X-ray eyes...but my heartrate has dropped from above 98 most of the time to under 60...and when i panicked and phoned the ward, they said it was because the pressure had been taken off my heart as the tumour broke up...which is fabby!!! I also feel it easier to breathe and am not as breathless.

Chemo as a diet? Well I thought it would be effective (as I have to be the fattest person getting chemo in my unit LOL) but although the first 3 days were pretty much soup and water...the steroids have kicked in and I have eaten heartily for the past 2 days...so no, all in all, I don't think it'll catch on (I hear Rosemary Conolly sighing in relief)

A funny thought tonight: i need a new 10 yr passport as mine runs out in June...but if I don't hurry, then my 10 yr photo will be of me BALD!!! I just imagined having to carry a flesh-coloured swimhat around for years to come to prove I am myself at any airport!!! (What, me? sick sense of humour?)

Oh this has been such a fabby entry, I think I'll just copy and paste to the diary for those missing it on general, or those even sadder people who actually CHOOSE to read it twice!

Maybe those streroids have made me mad...Better go and chill for half an hour in front of UK Gold....yawn....the national insomniac's

03/04/2004

Well things are getting tough now. I had my first dose of chemo on Thursday. The rituximab (which is given alongside the chmoe to help break down the right cells) took most of the day to go in via a drip as I'd had a slight reaction to it so it had to go slowly...I managed to read a whole novel before the chemo itself got put in at about 4pm. The chemo consisted of three injections put directly into a tube already in my arm. It wasn't sore, although one of them made my ears burn a little and made me feel a bit woozy. I went home at 5. I felt fine, and ate tea and took my anti-sickness pills at 7pm. By 7.30 I felt pretty bad and by 8pm had started throwing up and feeling really shivery and cold. The hospital had said to check my temperature and if it got over 38 degrees to phone them. It got up to 38.8 by 9 o clock and i felt so cold and shivery i was shaking all over. I was admitted to hospital for the night, where I was pumped full of fluids and anti-sickness and anti-biotics. I slept most of Friday afternoon and got home at night. I still feel very weak and shaky..and quite queasy although i haven't been sick. I just feel yucky.

Hopefully this will pass over the next few days. they say the bigger the tumour, the owrse the reaction...so I guess as mine is large that explains it. It also means the tumour is being attacked and is dissolving (albeit dissoving into my body and filling me full of toxins) so that's good too.

This is the start of the fun!

30/03/2004

I met with the Haematologist last Thursday and he explained the chemo I'd be getting and that he thought I would also need Radiotherapy at some point. I was meant to be starting the chemo on Monday (29th) but then the hospital phoned to say I needed another CT scan which would be 7-10 days. I was awy for the weekend so my Dad phoned my cousin who's an Oncologist and she said she would phone my consultant. I don't know WHAT she said, but it worked: my CT scan was arranged for today (30th) and chemo for Thursday (1st of April).

The scan was fine today. I had to drink yucky stuff, a whole litre of it (eeeeew) and also got an iodine drip during the scan. It was all over in 15 minutes though and i was out in time to collect Bethany from Nursery and go to the soft-play with my friends too.

Chemo on Thursday is a bit of a scary prospect.I don't know how I am going to feel...Just now I want to get ot started with and begin to get rid of the cancer asap...but it's also the end of one section of my life.

I guess there's no element of choice here...and I will just have to go ahead as positively as possible and take what comes. We're getting a toilet fitted into my cupboard in the bedroom though, so I don't need to go up and down the stairs as often! LOL

Better go and get DS from school: life goes on as usual!

20/03/2004

I will post this into the diary...but also put it here for those who haven't found my diary yet LOL

We found out yesterday that I have a large B-cell Lymphoma. B-cell means that unfortunately I have the aggressive type of cancer where the cells are dividing very quickly. The tumour I have hasn't been there very long, it has just grown fast.

The good news is that chemotherapy works by killing dividing cells, so my type of cancer respods well to chemo. But it will be aggressive chemo to combat an aggressive cancer, so my hair WILL fall out and I will be severely immunosuppressed (have no immune sysytem) which means i will be unable to take my babies to school or nursery. If I pick up even the slightest infection i will have to get my bloods tested etc or I'll end up in isolation...which scares the hell out of me: being away from the kids.

TBH I am now feeling a bit scared. (NOW? i hear you all cry, surely I should've been scared weeks ago!!! LOL) I don't want to have to leave the kids and stay in hospital, but tbh I don't see how i can avoid at least a few overnight stays. In fact the chemo is sometimes given during a 2-3 day stay.

I don't want this to disrupt the kids, and it hurts so much to realise there's no avoiding it. I'm their Mummy and it's MY job to put them to bed and kiss them last thing. I KNOW other people can do it just as well as me...but I don't want them to have to.

The only bit of good news is that we do have critical illness cover so may be able to afford to get our house extended in order to have a bathroom upstairs and a spare room so if my Mum has to come and stay she'll have a room. (every cloud has a silver lining!!)

XXX

Sinead

20/03/2004

19/03/2004

Well not much to report this week. The written confirmation of my results are not yet with the local hospital...so I have basically been told nothing further. In fact I have even been told that although it is definitley a Lymphoma, it is NOT certain whether I have non-Hodgkins or Hodgkins type afterall.

It is very frustrating feeling like I am out of the loop and all this really has very little to do with me. I want to phone people and rant and rave at them...but don't even know where to start.

Another bad subject is that my cousin (the oncologist) feels it is very unlikely that I will be able to go to france in the summer. We (me and the kids) were booked to fly over to france and have a week with my parents in their holiday home near Disneyland. We would be there for Liam's birthday. My sister has offered to take the kids in my place, but I don't know if I could bear them to be away for a whole week without me. Bethany will only just be 4. On the other hand I don't want to ruin their summer. I feel so guilty thinking of the things my kids may miss out on because they have an "ill Mum". I want to be normal again.

I feel like I am prepared to go through so much, but unprepared to face the know-on effects on those I love: to me, that is far harder to face.

I am still feeling positive about the whole thing. Just more concerned now about how it is all going to affect the kids and my family.

16/03/2004

I managed to speak to a registrar yesterday, and found out the tumour is a Lymphoma. It is non-Hodgkins, which is about all I know. (sorry!) Having spoken to my cousin who's an Oncologist, I now know the next few processes I'll undergo before getting started on treatment: I'll need a full body scan to check for any other tumours, a bone-marrow biopsy (sounds sore, so watch out for another fainting episode) and lots more blood tests. Once they know the exact location and make-up of the tumour then I will begin very specific treatment which will amost definitley include chemotherapy and radiotherapy...

I am glad I know what I have now. I musr admit to having a secret worry they would tell me it was a very rare and untreatable tumour. So by comparison, Lymphoma is almost good news. It's funny how 4 weeks ago ANY form of life-threatening illness would be bad news, but now the goalposts have moved somewhat and the less life-threatening the better.

Lymphomas are very treatable and also very curable. I don't expect the next few months will be much fun...but I am not going to let this beat me. As I said to Euan "You're not getting rid of me THAT easily"!

09/03/2004

Update so far...

On Monday the 9th of larch I had a CT assisted Biopsy on my tumour. It didn't go too well, as I fainted during the procedure and all hell broke loose! The good news is that there was enough tissue gained to test and make a diagnosis. I am now waiting for the result, due in next week, maybe wednesday.

This has all happened very quickly, and I am not really sure how I feel about the whole thing. I suppose I am trying not to think too much about what the future may hold until I at least know what the tumour is and how it will be treated.

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