Finally started treatment

So I have 4 weeks of chemoradiation ahead.
I had my first one today and it was fine. Over and done with without me noticing really.
The machine was meant to be running 60 mins late but I was actually taken in only 20 mins late which was good.
Before I went in a lovely nurse went through everything with me. Once again reassured me that 4 weeks is the norm at this hospital. Told me I could shower and use moisturiser as normal. He said no need for unperfumed if I normally use perfumed. He said that because the machine rotates round me it shouldn’t cause me problems. Fingers crossed.
I’m not to change my diet just yet. Wait to see what happens apparently. Drink lots (which I did but had to pull up on the hard shoulder on the motorway for a wee! I was bursting!!!)
He said side effects won’t kick in for a couple of days.
I did think I had a warm sensation in my chest and I also had a bit of a headache on the way out but both soon cleared.

All in all it was good today. The unknown has gone. Now I’m just waiting for the dreaded side effects but, hey, I’ll handle them best I can x

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Bless you, I have been reading your posts and following your progress so its nice to have a update. Please do keep us informed and you always seem so happy and upbeat about things, I admire that as iv been a wreak though my journey and now painfully waiting test results yet again.
Big big hug from me
Jo x

Awww thanks for the hug and your nice words. I try to be upbeat - I think putting a brave face on does as much for you as those around you.  I have 3 children who I want to think mums fine, even though they know I'm going through treatment which will make me poorly. 

I do write a lot don't I.  I like to know the ins and outs of a cats backside. I think a lot of info is a good thing. 

I am hiding myself away from most of the world. It's my way of coping. You lovely people on this forum, the macmillan one and a facebook group I found have been wonderful to me. 

I writems my posts as a but of therapy for me and also I think it might help others. I have gained so much information and comfort from the posts on here. 

I like to know what to expect.  That way I can expect the worst buy if it's not as bad then I'm happy. 

How are you after your hysterectomy? 

Hi Philleepa :-)

Great to know how you're doing! I find that writing things down is a great way to get them all clear in your head, and of course we are all more than happy to read whatever you post. I expect the headache stemmed from being on high adrenaline all day and that now that you know what to expect your body won't be poised in 'fight-or-flight' mode for future sessions. I expect your first side-effect will be fatigue, partly because you are on such high-alert just now.

Be lucky :-)
Tivoli

Hi Philleepa,

Glad your first day went ok, I think it does get a little easier once treatment starts, plus you see someone everyday and if you do have any worries they can help, I found this.

Mel x

Day 2 done. I am now 10% through my treatment.  Can't be bad. Drove myself again today. Had a short wait. Machine was running 45 mins late but I got in after about 20mins. I was called in but ran for a wee first cos I need an empty bladder. Typically I struggled to wee. 

Anyway, I got in the room and the nurse asked me to wait for a minute in the cabin. Omg the panic. I thought I was going you be told that after yesterday's treatment they could see the tumour had grown (I have been getting bad back ache) and it was pointless treating me. I put my thinking cap on and realised there was only one chair so no Dr would come and tell me that. Turns out it was just to wait for the person who was in before me to come out. It's a real conveyer belt isn't it.

During the second time the machine went round me (37 seconds) the laser light went out and I panicked that the machine had stopped working. Yep, I am a drama queen. I asked at the end of the treatment and apparently the lasers are just to line up the tattoos.  They must think I'm mad! 

I've signed up to a study thing where they look at people and their side effects. That'll take about half an hour of my time on chemo days. I will be there 8 hours so it'll be good to have something to do for half an hour.

Coming home I felt a tingle of my tongue, my lips and my lady bits but I think it's all in my head. 

Am feeling fine atm x waiting for my little man to come home from school x 

The tingling on your lady bits is normal I had this. Your like me with the positive attitude and shying away from people. I found this to be good for me because then I could look and feel like crap and not have anyone telling me and asking questions. You may not get any side effects at all - the bladder issue is normal also! I use to sit on the ward and in between running to the loo myself I use to watch everyone else running to the loo constantly - sadly I was relieved it wasn't just me.

Keep your positive attitude with you as you will be challenged but don't try to keep up the front in front of your family no matter how much you want to as it will exhaust you. Your family understand - it will be sad at 1st but they will get use to it mine did.

Good luck x

Day 3 and I had an early start. Had to be at the hospital for my radiotherapy at 8.30am. Left the house at 7am (was awake at 4am). Got thereat 8am and was brought in at 8.15 am. I was had a bad back through the night but this started before treatment so I know it's not that - probably just stress. I also had a bit of trouble emptying my bladder and bowels but that sorted itself out. You just think everything is a problem starting don't you.

After radiation I went for my bloods with the lady from the study thing. My tolerance must be low cos she was chatting away and I just wanted to ask her to be quiet. I didn't though :)

Then the nurse struggled to find a vein (again) so I was once again a pin cushion. Then I had my consultation with the Dr.  The whole 3 minutes of it. Hi he said have you any problems. I told him about my back. Oh that won't be from the treatment he says  anything else? No? OK see you soon.

Lol

It's a good job I have you lot! 

Anyway I had a 3 hour wait at this point so I went to the cafe for breakfast. Fried egg, beans and mushrooms on toast (I've been told not to change my diet yet) all for £1.75! 

Still had a while to kill so went for a walk outside. That was lovelyapart from desperately needing a wee. I've drank so much today.

Went to the chemo ward and got taken in at around 12.20. The nurse told me stuff I already knew through reading and this forum but I had to listen cos I didn't want to be rude. She was so nice, asking me about my family etc but I just wanted to say get on with it. I hate being in hospital. 

I had a syringe full of steroids and a syringe full of anti sickness thing.this made my lady parts tingle. The nurse managed to get the canula in on the first attempt so I forgive her anything. Small scratch - yeah - it's horrible. I dig my thumb nail into my finger as I've been told you can't feel pain in more than one place. It makes .e feel better at the dentist! 

Then the cisplatin went in. My word,  my arm was cold. I'll take a shawl in next week. They came round with sandwiches and soup which was nice and then coffee and biscuits. Yum.

That lasted an hour, then I was 'flushed' for 20 mins then had fluid for 2 hours and flushed again for another 10 mins. I was on the drip for just over 4 hours. It would have been less but I was up and down to the toilet and each time I did I managed to stop the drip so it had to be reset.  I don't know what to do about that. I like the fact that I'm drinking and also the fact that I m walking around bit I'm also prolonging my time on the drip. 

Anyway I was sent away with steroids and anti sickness mess.  Then had to face a massive traffic jam on the way home as there was an accident on the motorway and it was middle of rush hour. I have never been so grateful to have a she wee and an empty bottle in the car, unfortunately I did misjudge it a little bit and  ow have a wet seat!!!!! I was ok to drive too which was good.

I felt tired and hungry when I got home but still managed to take my little one to his swimming lesson. I'm in bed now, not sure if I'm tired from the treatment or beingawake since 4am! My legs are heavy and tired though.  I've not heard anyone say that's a side effect so I'll have another read x 

Thanks for listening x 

 

 

just like to say good luck with your treatment and send a hug your way xx

Wow! I certainly wasn't able to drive myself home, take kids to the pool and keep up a daily journal during my treatment. You're doing brilliantly! Thumbs up to ya!

Be lucky :-)
Tivoli

Awww,  it's early days yet  I'm under the impression that this is the calm before the storm. Last night I slept pretty well but felt tired when I got up. Tool myself to hospital again and felt fine. Treatment was quick and easy - I like these early appointments - less time for delays. Home for lunch and now watching loose women.  

My legs were heavy when I got up but feel fine now. Going to tAke the dog for a walk to post off my pip claim. I got told I didn't need to fill in how my disability affects me (cos it hasn't yet) but they are insisting I do. Bit gutted that I might not qualify for it. I'm self employed so only entitled to  £73.10 a week sick pay. Hopefully I should qualify for tax credits. 

I'm doing a daily journal because as you all know l, before my treatment I had no idea what to expect so as much as this helps me to write it down, I'm hoping it might help other people who are feeling afraid x 

 

Does anyone know why I have to take steroids btw?

Quick update. I managed a lovely long walk with the dog and have done in excess of my 10000 steps today. I'm still not feeling any different apart from the fact that I am struggling to concentrate on anything long.  But I've been like that since diagnosis. 

Tmi I know but my stools were harder tonight than they have been (down to the chemo maybe?) And I have a very very slight feeling of nausea.  I think I'm just noticing everything cos I have nothing else to focus on. 

I made a big tea tonight for everyone and also went to the supermarket too. I know it sounds stupid but I'm proud when I can be normal.  I bumped into one of the dad's I childminded for and I felt very brave and put on a face and said hi to him when really I just wanted to hide.

Hoping to go to the garden centre tomorrow to buy some spring flowering bulbs.  I am hoping that when they flower all my treatment and side effects will have finished and I can look forward to getting back to my life. Or as close as possible 

Brilliant idea! There's nothing as cheerful as daffodils. Is there a chance your stools are harder because you are putting so much liquid into your body that it is pumping it out as fast as it can via the kidneys? Just a thought.

Be lucky :-)
Tivoli

Ah, I never thought of that. I thought it might be a sidr effect of the chemo. 

Don't you notice every little change in your body!

Another good day again today. No symptoms as yet but apparently this will start next week.  Happy to be tired but am dreading the dihorrea. I feel it will make me housebound which I hate. 

I've managed to drive myself to and from the hospital every day and clocked up in excess of my 10000 steps again today. Also been round the garden centre with my mumand went to see my youngest receive a book prize on school so life is pretty normal at the moment.  I'm having to remind myself that I have cancer.  Especially the fact that it's stage 4! I was asking the nurse if I get a higher level of radiotherapy than other people because of my stage and she said no it just covers a larger area. Makes sense really. I'll ask the same of chemo on Wednesday. 

I asked my mum to make our family tea tonight. I know she wants to help but that's the only way I can think she can. She's agreed to do it on a weds when I have my long day at the hospital.  That's great.  It saves me a job and she feels useful. Winner all round.

Nothing else to report really, have gone down to 4 litres of fluid today which has been better. Not as many trips to the little girls room.

I hope no one minds me updating this daily. I feel it's good for me and am hoping my experience will help others feel reassured. 

Oh my stools were easier to pass today in case anyone is interested. I am experiencing mini hot flushes but did occasionally before treatment and my back hurts but again, that started before treatment.  I did tell the Dr the other day but I don't think he was interested really. I suppose if it is the tumour it's being treated with everything else. It does go after a while with ibuprofen 

Well done Phil

Try again Helen! Well done Philleepa. You are doing brilliantly. Marvellous to read you are driving yourself there and back and keeping as much as possible to a normal routine. Your treatment will be over before you know it. Keep up the good work. be proud of yourself.

love n hugs

Helen

xxxx

Thank you Helen.  I just was so uncertain before I started my treatment  (and still am for the next few weeks ) so I thought if I could update every day then it might just help others as well as helping me. I think it'll be good for me to look back on too.

I just hope that it works and I can watch my children grow up x 

Hey phileepa 

I've been following your story

And I'd just like to say you are so strong and I can see you are determined to beat this!!

Keep up the good work x

 

Hey Philleepa :-)

It's great to read your daily journal! Don't apologise! And it's great that you & your mum have come to a system that's good for both of you.

Be lucky :-)
Tivoli