Kels's blog

Sleeping Pills.. Bad Mornings Lately!!!!!

2010-02-15T14:45:29Z

I have been taken sleeping pills (Zopiclone, Imovane) on and off for 6 years now with no problems, but just lately i find that i have to take more each night due to anxiety and even in the day now to calm myself down.

But my biggest worry is for the last few weeks i wake up virtually on every hour every night all through the night, ie 2am, 3am, 4am, then i finally go off till usually 7am but when i awake i have this immense feeling of fear it is so intense i sit up in bed clutching my duvet crying my eyes out and praying it will go away, i now get this most mornings,

I know most people that don't usually take sleeping pills will say "oh its definately the pills" - ditch them blah blah" But I'm afraid i can't i have been taking them for 6 years and i now have to get them from the internet as i'm getting through so many a month i only get one prescription per month from my doctor and that is from pleading as they don't like you taking them long term.

The state of my cancer so far is :

Non Hodgkins Lymphoma B-Cell

Had 6 x Rchop

2 x R-Ice

1 x (something cant remember name of)

basically had chemo for one year now and tomorrow i find out if i have to have a stem cell transplant / harvest or just Radiotherapy to remove scar tissue as the tumour infront of my heart has shrunk a bit more and no uptrace seen on pet scan.

Does anyone else with my type of cancer wake up feeling like they have been hit with a sledge hammer? feel confused and disorientated? feel really scared of something for no reason and not knowing why?

Although it looks like my prognosis is good with the cancer itself i am getting more worried about my mental state of mind, i am 38 years old and live alone with my 15 yr old daughter and All this anxiety and stress is killing me more than the cancer ever could have!

Although i have supportive parents that visit sometimes i feel so alone and scared and i feel like im stuck in "groundhog day"

I don't know what else to say.............

Apart from is this due to the cancer that has almost gone? can cancer affect your brain even though it is elsewhere in your body?

thanks for reading x

Harvest On Hold

2009-12-22T07:46:45Z

Hey All

Well have spent the last few months back and forwards to London having meetings about my stem cell harvest / rescue.

I had a short chemo 2 weeks ago then growth injections at home for 10 days but unfortunately got a water infection so my white cells were used to fight the infection rather than producing stem cells.

So now on antibiotics which are making me feel really sick and i have to go for another meeting on Tuesday December 29th to see what to do next.

I might have to do it again chemo / injections / and hope i dont get an infection or they said another option to get my stem cells is via bone marrow corkscrew (NO THANKS!!) which apparently takes an hour.

The bone marrow biopsy i had was bad enough and that was only for 5 minutes!

When they eventually get my stem cells and freeze them i will then have to stay up there for 4 weeks to have a ridiculously high chemo for one week which apparently takes you right to the edge, and then have my cells given back to me then recover for 2-3 weeks.

Still the first week i go for the chemo they put you up in a hotel and treat you as an outpatient so that will be interesting, my daughter who is 14 will be coming with me for that part, but am dreading the 2-3 week hospital stay after as i dont cope very well staying in hospitals i like my fresh air!

I am feeling ridiculously emotional at the moment with it being xmas and everything, I am trying to stay strong for my daughter but it's very hard. Her nan is staying with us at the moment which is such a big help, but yesterday i felt so depressed i just couldnt get out of bed at all.

Today i need to make an effort even though i feel like ****

alcohol helps when im feeling low but the hangovers i get are so evil it puts me off having a drink now. I feel so sad inside and am so fed up with crying all the time I dont know how to cheer myself up :(

Anyway here's wishing you all a lovely peaceful xmas and i hope you all have a lovely time, my thoughts are with those of you who are alone or single parents going through this hell alone, and to those of you who are very poorly hang in there!! :) xxxxx

High Dose Chemo Sucks !

2009-10-14T10:49:50Z

Hi All

Sorry been so long since i updated with what was happening.

But this litle story will explain ..

After having the usual 6 rounds of R-Chop for Non Hodgkins Lymphoma part of my tumour was still there in my chest, so approx four weeks ago i was admitted to hospital to have a week long high dose chemotherapy session called R-ICE.

After having the break from all the chemo i had i was just starting to feel a bit "normal" again until i was admitted!

Something set me off and i could not stop crying for love nor money totally broke down said i didn't want any more treatment ect, to be honest the ward they put me on was really depressing aswell which didn't help, so they moved me to isolation and gave me long chats about my feelings blah blah, decided to put me on anti depressants (which i still feel haven't helped a great deal) and then the chemo began..

R-ICE

stands for

Rituximab - Ifofsfamide - Carboplatin - Etoposide

The Ifosfomide is the nasty one as it can leave you seriously confused (As if chemo doesn't do that anyway) so had this week long chemo every day, it went ok except i felt like being in prison and every opportunity i was off the drip i was outside sniffing the air!!

The weekend i got home from this treatment i was quite ill, i couldn't walk at all, it felt like my veins were being stretched as i tried to walk (Sorry if that's too graphical) my stomache felt like it had been ripped out and i basically felt like i was dying. I remained in bed for around 4-5 days then gradually started to pick up again.

Luckily my mum is staying with me to look after my daughter i couldn't of got through it without her!!

On Weds 30th i went for a blood test and was due to go back into hospital on the following Monday 5th for 2nd week of RICE chemo, but when i got home from the hospital blood test on the wednesday i got a call from the Lymphoma unit saying i was to come in immediately as i was Neutropenic :/ which basically means your blood platelets are really low and you can severly bleed and your immune is dangerously low also.

So tail between my legs off i went just knowing they were going to keep me in for rest of that week and the following week for chemo, but it didnt stop there ohhhhhhhhh noooooooo got there they restored my platelets as i had these little blood spots appearing on my legs and arms and some bruising that went ok, said farewells to my mum and daughter who came up to visit me every day (bless, dont know why though i was a right moody cow i hate being stuck in hospital!!) woke up the next morning and my face was swollen!!! I'm like oooooookkkkkkkkk what now??????? so all these people kept coming and poking me and pulling my face into all sorts of wonderful shapes lol, then they came to the conclusion it was a bloody abcess on top of the root of a side tooth !!! :(

Now i am the biggest coward when it comes to dentists but they had a guy there that was really patient with me, took me down to this "plastic surgeon type room" at 11pm !! I sat in this chair for over an hour with him pulling, me screaming and pushing him away, had to have 7 injections to numb it completely then finally it was all over......And that was all before my next chemo had even started!

The nurses were wonderful especially the one that stayed with me she was more scared than me lol, but i just requested a lot of morphine that night while the abcess made its way out my system as they didnt have time to give me a weeks antibiotics.

Anyway............. ended up having my second load of crap Rice chemo, got home last Friday night (It really did feel like i'd be freed from prison) been in bed ever since!! it has knocked the hell out of me this time. This is my 6th day out of hospital and i still feel completely out of my brain, It's the first day I've made it down the stairs, just had some soup now feel sick, and somehow i have to make it to the hospital this afternoon for a bloody blood test :( i will prob go with mum in a cab But i have to go incase I'm Neutropenic again) OMG if they call me in again they will have to pay me this time to come back in nothing will part me from my lovely bed again and my little window i can open for fresh air lol !!

So after i have had that done today i will come home probably go back to bed becausd i ache all over so much and my head is spinning, i dont know how ive managed to type all this so please forgive spelling errors x

It's just so frustrating when you have the chemo you feel ok its AFTER it hits you for 1-2 weeks!

And the next milestone i have they have made me an appointment in London UCH for November 3rd to see a consultant about having stem cell and high chemo for 2 weeks . Which i am really peed off about i dont like the thought of being THAT far away from my family for 2 weeks, feeling like hell with no fresh air!! *cries*

High Dose Chemo Starting Next Week

2009-09-05T10:51:40Z

Hey Everyone, I did have a 1st blog but i dont know where it went :S anyway.. The lowdown is.. I was diagnosed with Non Hodgkins Lymphoma back in March this year (2009) i have just finished 6 sessions of RCHOP chemotherapy about 5 weeks ago, I had a pet scan to see the result of things last week and.. Was hoping for remission but the tumour in my liver has gone and the one by my kidneys has gone but there is still some left infront of my heart in my chest. So i went to Haemotology clinic Thursday just gone, and my oncologist told me i will be admitted next week for 4 to 5 days for High Dose Chemo :( then go home to rest for 3 weeks, then back in again for another 4 to 5 days for another dose! Then another pet scan, and maybe after all that might have to go to London for stem cell transplant (which totally confuses me) I must admit after everything we've been through i was kind of hoping for an all clear but i clearly need this extra treatment as i have had awful night head sweats lately and a lot of dizzyness. If anyone else has had high-dose chemo please tell me what the worst side effects are as the oncologist said they can be severe, including mouth swelling and ulcers not forgetting the dreaded nausea and vomiting :/ My good ol' mum is staying with me at the moment so she can be here for my 14 yr old daughter when i go in hospital and she is currently cooking the biggest fry up you have ever seen (Hey I'm making the most of my freedom before next week!!) :D