No go again today.

I had another allergic reaction to the drug today and so chemo had to be stopped :-(

Today went pretty much like this;

I went in for 2:30 and we had my normal half-hour battle to find a vein that was willing to play. Four stabbings down and we were in. Hooray.
Then on top of the mega steroids I had taken that morning they pumped me full of even more steroids and a cocktail of allergy preventing drugs before we got started on the test dose.
So, the test dose was set going and I set to furiously reading my magazine and concentrating on what handbag and sunglasses I should be buying for the summer, but to no avail.... I started to feel the tight chest thing again.
It was nothing as bad as last time and I was able to call nurses over and tell them I thought it was happening again so they could stop the IV and I calmed down quite quickly. I still got the achy achy back again so I am pretty sure it was another allergic reaction. I also got hot and went the same colour as my red wig apparently.

So the upshot is that they are switching me to another drug (Taxol) and will try that one next Tuesday. I am not going to put too much about it here because there is no guarantee I won't react to that one and have to re-think things again. It is supposed to be less likely to cause allergic reactions than Taxotere so we will just see. The regime for that will be a low dose given every week for the next 9 weeks. So the same time scale really but I have another 9 chemo clinics to get through now.

Quick update: Another slight hiccup as there are no chemo slots available for Tuesday, so my next chemo trip is scheduled for the morning of Thursday 3rd May.

Lets try again tomorrow

Limbo day today has been spent mainly sleeping and lounging on the sofa (I think the Piriton has made me drowsy - that's my excuse and I am sticking to it!).

So, off to clinic again tomorrow for 2:30 to have another go. I have to set my alarm for 6am tomorrow morning to get up and take my 10 steroid tablets to hopefully dampen down any immune reactions that might occur.

Fingers crossed.....

oh and by the way my hair is coming on great. The original baby fluff fell out round the sides and left me with a Mohican, so I shaved it off again and now I have proper darker hair growing. It may well thin out again after getting my chemo drug hit but it is definitely growing much faster these days. It is such a novelty.

I seem to have the hiccups.

No chemo for me today :-(

All was good-to-go with my bloods, however, on giving me the drug I had an allergic reaction to it and they had to stop :-(
It happened right in the middle of a game of scrabble (and I was winning too, but I did spectacularly manage to throw a Z10 pointer under the chair in all the commotion - cunning hey!).

I had received about 5 minutes worth (25ml out of the 250ml) when I suddenly felt a bit weird in my chest, became very breathless and my heart-rate started going like the clappers. It was a bit scary. I went all hot and clammy and my lower back became really painful. But within seconds 3-4 nurses had sprung into action and started administering drugs and Piriton. It all was under control pretty calmly and quickly and started to settle. Doctors were called and I was checked over as okay but sent home with antihistamines.

I was a bit annoyed at myself that in the commotion I forgot to tell them they couldn't take my blood pressure on my surgery arm because I have had lymph nodes removed and it puts me at risk of permanent chronic fluid swelling in that arm (lymphodema) from anything such as injections, taking blood or blood pressure, acupuncture and Jacuzzis (yes how stupid!). I didn't even think about it until the second or third time they did it. Doh!

The nurse said these allergic reactions can happen on the second time you are exposed to a drug. So they decided to stop for today and get me back in on Thursday afternoon to try again. They will do a little test dose first and if it is all good they will give me the whole thing slowly over 3 hours instead of the usual one. Bit apprehensive but not too worried about it going ahead. Another lady on her second taxol (similar to Taxotere) had an allergic reaction too but much earlier in the day than me and they re-started her with no problems. So fingers crossed. Now I am in limbo as I was all ready for chemo today and now have to just wait another day or two.

Another dose tomorrow.

Woo Hoo...
Todays neutrophil count from pre-chemo bloods = 7.9 x109 cells/L
(above 1.5 x 109/L needed for chemo to go ahead - note I have finally found out the units for these counts - it was bugging me!). My platelet levels sounded good too (needed for blood clotting and to stop me bleeding too much).

So I haven't had the official go ahead from my chemo nurse but I reckon I will be good to go with chemo tomorrow.

I am feeling quite happy about that - bring it on! This will be dose number 6 out of 8. I can nearly start to contemplate the end in sight.

nothing to declare...

Well, I am pleased to report that there is nothing much for me to come and say here at the moment, unless you want to hear all about my gardening and how I am very excited about having germinated some Rocket. But that would be very dull and so I will spare you all.

Suffice to say life is pretty good at the moment and I have been an energetic busy bee over the last few days in the garden and going into Leeds to get up-to-date with folks at work. I am not feeling so much like I am living under a cloud of "fuggy-ness" on this drug, I still find my brain can shut down after an hour or two of concentrating and talking, but general energy levels are good.

I am having an enforced sitting on my bottom day today because despite feeling alright I don't want to burn out before my next chemo session on Tuesday. My immune system does have to work hard to pick up enough to have my next chemo and as I have said before I intend to stay on track. So, if that means lounging around on the sofa.... then so be it.

Back to normal.

I thought I would just put another post with picture to show I am back to normal again and balance out the looking-crappy-in-hospital photo that was on the earlier post. I wouldn't want everyone to think that's the current me.

I am feeling relatively free of side effects at the moment (although I don't know how my immune system is doing and whether it is back to normal so I am still being a bit careful and on the look out for signs of infection). I think a new measure of how well I am doing could be the "have I put on make-up today?" test. Today I started wearing make up again and have even matched my eye colour to my clothes so I must be feeling well. However one thing I am coming to realise is that things can all change very quickly when on chemo.

Another thing to report is that I am growing hair on my head! I have now got the softest lightest baby fluff covering it. It catches the light and glistens white which gives me a sort of halo-like look.

I am still a bit deflated after loosing out on 4 days last week due to my hospital admission. I guess these days I build up the occasions I get for a bit of serious socialising, and therefore have a lot further to fall when I don't get to do them. But, I have to stop dwelling on that and look to the next thing.... hopefully if this chemo leaves me feeling a bit brighter I can make the most of the sunny days that are coming.

Finally, I have been released.

I am home!

My blood levels have gone up (although not by much) so they have let me come home. My 4 days in hospital are hopefully over and I am free of the drip. First thing I did on getting home.... I had a proper piece of toast - it just isn't the same on the inside.

On the up?

Fridays’ neutrophil counts = 0.3
Currently feeling = OK
Verdict on hospital food = no comment!!

So that means another night in the hospital, however, if my cells are raised above that level tomorrow and they are happy that I am going in an upward direction they will think about letting me go home. Woo Hoo.

For now they want to keep me on the IV antibiotics just to make sure which means remaining hooked up for another night (it gets quite annoying having to wheel my drip around everywhere with me).

So, I am doing OK. I still have my own room which is nice, but I do get woken up through the night for observations which is not so nice.

I spoke too soon...

…4 hours after writing my last post on Tuesday I found myself sitting on a bed in hospital waiting for blood test results which would be about to signal a stay in hospital. On going to the GP she found I had a raised temperature and so I needed to get myself over to hospital to get checked over.
10pm and the results were in... I was neutropenic! I was convinced I would be going home, instead they got me hooked up to IV drip to feed me antibiotics and got me my own little side room to stay overnight.

48hrs later and I am still here!

Neutropenic means my levels of white cells (neutrophils) have dropped to levels whereby my body would be unable to fend of any bacterial infections that might decide to take hold. Therefore I have to be hooked up to IV antibiotics to do the job for them. When I came in my levels were 0.7 (below 1 is low)… by Wednesday they had dropped to 0.5…. and today they are still going down at 0.2… grrrrr another night in hospital for me until they pick back up. Ironically I am feeling alright, I just don’t have a functioning immune system at the moment so it would be quite dangerous for me to be anywhere but hospital. I need constant observations of my temperature and blood pressure etc.

… so now I REALLY hate chemo. Up until now I had been rolling with the punches it dealt me. This time it has just gone too far. Yes, I am quite concerned about having no immune system and a bit scared about getting an infection. Moreover, I am incredibly p***ed off at having to be in hospital. Tomorrow we were supposed to be going to a friend's wedding. Words cannot quite describe how much we had both been looking forward to it. I had been on a special shopping trip and bought an entire new outfit to match the wig I had chosen to wear for the occasion. I was just really excited and couldn’t wait. So most of all I am feeling really annoyed at my stupid body for getting in the way of this and I have shed a lot of tears this week (I think the nurses may have learnt to avoid asking my about the wedding because they now know how prone I am to blubbing!). Anyway, there is no chance of going and it is all out of my hands now so I just have to get on with it.

I don’t know how long I will be here… that depends on my immune system. I really hope it starts picking up soon as I would quite like an immune system back now please.

Taxotere day 7

well, this is a bit new.... again, I don't want to speak too soon as it is my first one.......

But, I do feel a lot better on this drug so far. It's now day 7, however, I don't have my usual slow, spaced-out-ness usual for this time of the cycle and I would go so far as to say it feels like week 3 already.

However, its never all that simple.
Good points; Clear head and more energy
Bad points; mouth ulcers and oral fungal/yeast infections. blugh. That makes it very difficult to swallow and taste (chocolate doesn't do anything for me at the moment). My finger tips are also ever-so-slightly numb and the beds of my nails are a little sore when I do things.

So, all in all it has been a very quiet Easter with my little dip in energy coinciding with the sunniest day of the weekend, but I did put myself out on a reclining chair for a nap in the sun so it wasn't all bad. Although at the time when my limbs were too lazy to get me out of bed for the day or I was having trouble eating due to my horrid mouth, then I felt a bit sorry for myself, but as it passed so quickly I can practically ignore it. (The mouth is still to clear up but I am off to the GP's for a bit of help this afternoon)

Here's hoping I keep going from strength to strength.

Wigs 'n' things.

Today I am going to write about hair or lack of it.

I once watched a programme about Gail Porter and her hair loss. It followed her trying out wigs. At the time I couldn't really understand why she didn't get a wig as she looked really good in them. At the end of it she decided to stay bald and I didn't really understand why. I can now totally see her side of things.

I have never really felt the hair loss side of things has been that much of an ordeal. I know it is the biggest thing for many people who go through chemotherapy (and there have been moments when it's not that easy to deal with as I have sat in front of the mirror and felt like a drag queen in wig). But for me I viewed it as part-and-parcel of the whole thing, there was nothing much I could have done to prevent it .
(well there is the Cold Cap but the idea of having my head in a big frosted helmet at -5C was not an option - you have to stay and wear it for 2 hours after chemo and it can give you headaches. My clinic visits are becoming enough of an ordeal on their own thanks very much - so the hair was just destined to go, and it is not guaranteed to work. It is supposed to contract the blood vessels in your scalp and reduce blood flow and therefore reduce the chemo drugs that go round that part of you - similarly if you get mouth ulcers an ice lolly can do the same there).

Yes, having it fall out all over the place was annoying and quite surreal accidentally touching your head and coming away with a clump of hair. But, when I finally took it all off myself with the clippers, it was the best feeling. So much relief that it was gone. Wish I had done it much much sooner actually..

But anyway I digress, back to the Gail Porter thing,

Now, I have 3 wigs which, although not super-undetectable-suits-me-fantastic, I am making the best of. And at times I can feel on top of the world with my Vibrant Red one or super glam with my Footballers Wives curls.
However, I am starting to feel like they are not the real me, when I am wearing them I am putting on a disguise and sometimes I just want to be "me". I don't want my bald head to be something shameful which I have to hide away from all eyes. I want to be bald and proud, because that's the real me. And that is the essence of why Gail does it the way she does I think.. after all hers is permanent. I know mine will grow back.. how it grows back? your guess is as good as mine... my money is on blonde (my sister will be so jealous) and I wouldn't mind a touch of curliness... but that's just to wait and see now.

So, whenever anyone comes to visit me at home most of the time they get the bald me. I have also been to the supermarket and on trains etc. bald and found it really quite funny how many kids just stop and stare. It feels really quite liberating to go "au-natural" in public... a bit like I am doing something naughty like walking round naked or something. But, most of the time I just haven't even thought about it when bald.

So, that's me, bald and hoping to be proud of it!!

However, saying all that.... On impulse on Monday when I went into Leeds to get my pre-chemo bloods done and the spring weather made my wig so hot (long and curly was being sported) I just had to whip it off in the middle of the street!! I decided I couldn't cope through the summer with longs wigs, so on impulse I walked into the Wig shop in Leeds and tried on some short bobs intending to get something short and mousey, similar to my original natural colour. And what did I come out with...........















Yes, platinum blonde bob Dawn is here! It is such a fab wig, its tapered up at the back and feels so much like having real hair again (it should do for £175, although heavily subsidised on a NHS prescription... so that's where all the NHS money has gone - funding my wig habit!). I can style it and play around with so many looks. I think it is definitely one for lazy summer days in shades and down the pub! Am I totally mad??? I hope not, I love it!

So far 5 cycles down, 3 to go, the eyelashes and eyebrows are hanging on in there. They are very fragile and eyelashes are thinning but to have got this far and still have them I am so chuffed. I think the eyebrows and lashes are actually a bigger deal for me than the hair is! I stopped wearing mascara because not only does it accentuate that they are sparse, I don't want to pull them out. I am dreading the eyebrows going. One of them is starting to have a few barely-noticeable bald patches. I feel hair loss you can cover with hats/wigs but I reckon I will look pretty weird without eyebrows and as for drawing them back on...... eek.

Still ok.

Well, I am still doing OK, slightly sleepier today.

Yesterday was fine but was whacked by the time it came to bed-time (because the steroids can cause insomnia I have been trying my best not to kip during the daytime and it seems to have worked all through so far).
I even went out for a spot of fresh air and a drive in the evening with James yesterday which is totally unheard of on the day after chemo for me (still anticipating a forthcoming drop though).
I have less steroids and pills to take with this chemo because it is not suppose to be so sickness-inducing. I think I have worked out that the steroids give me the funny-mouth taste and desire to snack on crisps and such. So, as I have now finished the steroids for this cycle those cravings seem to be under control.

They didn't re-assess or up my chemo dose in the end as they said it was fluid retention not fat that had made me put on a stone... hmmmm not sure I agree with that.
Back to the telly and blanket now :D

A whole new chemo experience...

Time in: 10:30 am
Time out: 1:30 pm
Number of stabbings to find vein: ONE
Yesterdays mood: Perky, did they give me any chemo drugs???
Today's mood: Yup, did they really give me any chemo drugs???

well I never, that was a bit different!

All went ahead with chemo. A few worried looks passed between the nurses when they took my temperature and it was a touch high, but we went ahead as I was feeling fine in myself and had shaken off the infection.
I was hooked up to the drip after a successful piercing of a vein on the first attempt and was left to my own devices as this was just administered through a drip. No head rush for these drugs and I walked out feeling a little fuggy, scatter brain, but generally OK.
Got home, still OK... spent the evening sitting of sofa, watching telly, eating tea, bed at 11pm! not the usual chemo experience, it was great!

I had started taking steroids the day before chemo with this drug to prevent allergic reactions and so I may have had preventative drugs in my system earlier. Also they did think it was less likely to make me feel sick. But after the last few times I still asked for anti-sickness meds just in case. So not even a nauseous feeling passed my way!

However, I am keeping my feet on the ground and know I may have a mega crash brewing to hit me sometime soon. They say the main things on this drug are muscle and joint aches which can hit very hard and leave me immobile. Plus I might get numbness in my fingers and toes which makes doing walking and intricate tasks difficult (Yikes the idea of not being able to type my blog - how will I survive!).

But, you don't know how nice it felt to have an OK chemo experience.

Cutest God Daughter in the West!

I still have a bit of a cold, but it's deffinately getting better. I am just a bit sleepy really. Mainly I have a pretty rotten cough but the antibiotics hopefully will do the jobby on that. Still hopeful for chemo on Tuesday.

I had a visit from my cousin Sue, her hubby and my goddaughter Kelly this weekend. Kelly is just the cutest, smiliest, cutest little girlie. Chitter-chaterring away to me. I just had to put a photo of her on my blog. Awwwww such a cutey she makes me smile!