Soon to start chemotherapy

Hi RCFlyer,

Thank you so much for your lovely lovely message :) It really put a great big smile on my face!

I totally agree - it really helps talking and sharing with you, who is going through the same thing. People around us try to help and understand but truly don't know the actual feelings and just how tough it really is, both physically and mentally.

How is your sleep? Have you managed to sort it? I am also struggling to fall asleep and then wake numerous times throughout. I have bought a lavender spray which is meant to be calming. To be honest it's not stress or worry keeping me awake. Just thoughts in general! I need to switch off somehow. Hope it's got better for you.

That's a great way to look at the CEA glitch. Your right, the oncology team are amazing and they are the experts so I will also put my full faith in them. At my last infusion, my nurse was amazing and she explained exactly how the drugs work to catch those nasty cells and then it all made sense again and just from being educated about what is happening really helps me. I do have to odd negative thought (what if it missed some nasty cells, for example) but i try batting those away. It's also comes down to the fact that I have no control over what will happen so there is no point overthinking it.

So your next infusion is in a couple of days. How are you feeling? How was the rest of cycle 2? I'm so glad it's more on track for you and to be finished before Christmas will be fantastic. 

Cycle 4 for me has been tough. It is the most fatigued I have ever felt. I couldn't get out of bed for about 5 days and slept so much. Nausea was bad too. But it's all easing off now and I just have 5 more days of the capecitabine left. Then at least I am done for now (or forever with any luck!!)

I love that London brought up such great memories for you :) The Roundhouse in Camden :) I've been there, just the once too but I love Camden.. I love bands and gigs too and also used to frequent London venues when I was younger. Having children changed that! But I went to Brixton Academy for a gig in April this year and hope to start going more again. I grew up just down the road from Hammersmith! But now living in Bedfordshire, it's a bit trickier to get out in London so I have to arrange things carefully! You will have to arrange a great London trip for when you are all done with this treatment For me this time, London was chilled but I managed to get out for coffee with my sisters and with a friend too.

Thank you :) Saturday is the birthday! It's coming round fast and I'm feeling positive and happy.

I hope all is good with you. Have you managed to keep yourself busy during the days? 

Keep going, you are doing incredibly well. It does feel like a long way but really, by the end of November, you should hopefully feel more energy returning. Keep strong and keep going. You've got this

Hi Lays88,

So good to hear from you again, and great to see that you are sounding a lot more upbeat in your message. You notes about your love of music, bands and gigs brought a real smile to my face.

Although my taste in music probably isn’t for everyone, I couldn’t do without it. I always wished I could play a musical instrument, but being tone deaf and having no sense of rhythm doesn’t help  My brother has been a drummer for years, and has played in a few bands. I think the biggest gig one of his bands ever got was for Mo Mowlam’s birthday party (if you remember her). Unfortunately, I’m at an age now, where I’d still love to go and see live bands, but I can’t handle the hassle of the associated travelling. What’s worse is that I had to miss my last planned gig, because I was in hospital having the operation that led to all this. Particularly galling , because the gig was at a small venue in Folkstone. The Leas Cliff Hall, which only holds a few hundred people. It’s rare to get to see a major band in such an intimate venue. The following weeks they were playing the likes of the O2 and NEC.

I’m actually typing this while I receive my third infusion of Oxaliplatin. Feeling a bit like a pincushion again, as it took four attempts to get the cannula in, but otherwise enjoying the tea and biscuits. I am little concerned that they are not telling me everything here though. I asked for a blood form, for what I thought would be for my fourth and final chemo session, but they have presented me with five of them. Perhaps I can use them ‘just for fun’, if I miss coming to the hospital 

I’m really sorry to hear that your fourth cycle has been difficult. I can only sympathise with what you are going through, and send you my best wishes for a quick return to health. You know that I have everything crossed for you to get the good news.

My sleep patterns are still all over the place, but I’m managing alright. I’ve got quite used to watching Netflix at 2:00am, although I’ve pretty much run out of anything remotely worth watching. Otherwise, side-effects have been unpleasant, but manageable. The main issues have been tiredness and muscular aches/pains, which you are aware of only too well.

If I don’t hear from you before the weekend, best of luck with the CT scan, and have a fantastic birthday on Saturday. Many happy returns!

Stay positive and take care!

Hi RCFlyer

How are you doing? How has your third cycle been?

Your comments about the blood forms made me laugh!! However I presume they are checking all sorts of things. My last bloods checked 4 or 5 different things so hopefully it's all healthy and you can get through your fourth and final cycle. I must say you have done so so well and have managed magnificently so I really hope this is continuing for you. How is your sleep? Mine is starting to settle down. The lavender spray I bought seems to be working!! Ahhh Netflix - I'm struggling too. Although I started watching some stand-up comedy and that's actually raised my spirits a bit!

Yes the fourth cycle for me was awful but it a real triumph to take the last tablets of that cycle knowing that I didn't have anther infusion session!

Thank you for the birthday wishes :) My birthday was very low key but nice to be with my family. My children absolutely loved it. I'm still so tired though (could have happily slept through my birthday!!). I hope my energy levels come back soon.

I had my CT scan which went smoothly and I'm seeing my oncologist on the 24th for results. eeek. 

I am so sorry you had to miss your last planned gig :( This thing really does get in the way. Who was the band?? What is the kind of music you like? I'm very curious! I've always really liked the drummers in bands - I find them so skillful. I also wish I could've played an instrument, but I'm not sure I ever had the patience or perseverance. My genre is rock music but i have quite an eclectic taste and will listen to all sorts.

Update me! And keep going. You really are doing amazingly well One more cycle! Get through that and you can look forward to Christmas. p.s. i'm putting the tree up this weekend! Bit early? Oh yeah way too early!! I'm usually last minute.com but really looking forward to it this year for some reason (the kids help with that!!).

The side-effects are not nice at all and I know exactly how exhausting and frustrating they can be. I hope you are getting a lot of rest. Do your family come to help you?

Stay positive and strong. You got this!

Hi Lays88,

Great to hear from you! Only a few days now, until you get your scan results, and hopefully you’ll be back up to something like full strength by then. I’ve still got everything crossed for you , even though I know it’s going to be good news for you. Did they do another blood test as well? I had a call from my oncologist last week, and she said that she would be booking a ‘special’ (no idea what they look for in that) blood test, and a CT scan for after Christmas.

This cycle has actually been quite rough, compared to the previous ones. For the first four days, when I was taking the steroids, I had horrendous bouts of hiccups, which led to reflux and little sleep. When I spoke to the oncologist, she said that they were only a precaution against sickness. I didn’t realise this, and I was just taking them because I was ‘told to’. Think I’ll see how I get on without them, for the last cycle. In the last few days of taking the capecitabine, I started to develop bad abdominal pains, with a return of the reflux and some embarrassing burping. I finished my tablets four days ago now, but the pains, reflux and burps are still there. Needless to say, this is playing havoc with my sleep, because I can’t lay down, without triggering the reflux. I must’ve drunk a gallon of Gaviscon over the past few days. It helps, but not for long. Really hoping this has settled down before Round 4.

My musical taste is very much of a rock theme. Mostly, my music collection comprises what is probably classed as ‘hard rock’ or ‘heavy metal’ . I grew up under my brother’s musical influence. Partly because he had records and a record player I could use, but mainly because the alternatives were my dad’s classical and jazz records, or my mum’s musicals. So, my youth was mostly spent listening to the likes of Black Sabbath, Deep Purple, Led Zeppelin, Alice Cooper and the other rock stalwarts of the 70’s – even Supertramp!. In the early 80’s I discovered the likes of AC/DC and Van Halen (a little late to the party I know, but it was difficult to get to listen to anything that wasn’t on mainstream radio in those days), and a lot of ‘big hair’ bands that are probably best forgotten. I still love all of my original favourites, with Ozzy and Angus still providing the main soundtrack for my day-to-day life. However, in recent years, my musical taste has broadened both into some of the louder and angrier stuff, with the likes of ‘In this Moment’, ‘Disturbed’, ‘Zakk Wylde’, ‘Architects’, ‘Monuments’, ‘Killswitch Engage’….. the list goes on. Even though I may have developed a taste for newer, angrier stuff, I still like to chill with some blues rock, like ‘Seasick Steve’, ‘Joe Bonammassa’, ‘Eric Gales’, ‘Samantha Fish’ et al. My favourite new(ish) discovery has been a band called ‘Karnivool’. They were the ones I went to see at ‘The Roundhouse’ a few years ago, that I mentioned in one of my previous posts. Not sure what category they fall into, but if you like drummers, Steve Judd of Karnivool, is one of the best, in my humble opinion. Very technical. Sorry, that was some major waffling, and I failed to answer your original question, but I love my music. Even at 60, I still like to think I can ‘Rock Out’. As much as they protested when they were younger, both of my daughters can now appreciate AC/DC. The gig I was due to go to at the Leas Cliff Hall was for ‘Black Stone Cherry’. I first saw them in 2007, when they played their first UK gig at the ULU, in front of about 250 people. It was awesome! They got big after that, so to catch them at another small venue, like Leas Cliff, would’ve been brilliant.

Yes, It IS a bit early to start thinking about Christmas, but then I’m already sick of all the cryptic and annoying perfume adverts, and the epic 10-minute supermarket productions. You’ve still got young and enthusiastic little’uns to drive your festivities. My kids are grown up - been there and done that - so I’ve earned the right to be a grumpy old git

You take care! Looking forward to your good news on the 24^th.

Hi RCFlyer,

Firstly, I am sorry it's been a while. Life totally took over and it's been crazy busy. I'm not even back at work and I can't keep up with this crazy time of year.

The greatest news is that my CT scan came back all clear!! Such a huge relief  I just had a blood test this week to check my cea levels. But it's looking good. I'll speak to the doctor tomorrow to see how these levels are looking. My last blood tests showed that they were on the way down so fingers crossed this is still the case.

How are you doing? Have you started your last cycle? How are you feeling? Have the hiccups and reflux calmed down? I really hope it is all going really well for you. I felt the same about the steroids. I felt that they made me feel worse and caused havoc with my digestive system, so I didn't take them for the last two cycles. Even though I haven't written, I have been thinking of you and sending positive thoughts.

I love your musical taste. I love a lot of these older bands too but not even close to knowing them as well as you. I was a 90s kid and fell in love with Nirvana, Soundgarden, Pearl Jam, Chili Peppers, Nine Inch Nails, Foo Fighters and all the rock, grunge, alternative music on the scene and I always revert back to the 80s and 90s for music! I feel at a bit of a loss with more modern rock and metal but I'm going to check some of these new bands out that you have mentioned I have also met someone recently who is a heavy metal fan and so all of a sudden, through you and him, I have a whole feast of new/old music to listen to! I can tell you have such a great passion for music. I love rocking out too and hope I will still be rocking out at 60!

Ok, so I am over Christmas already!! There is too much to do  But you're right - the kids will keep my christmas spirit up! If it wasn't for them, I definitely wouldn't be that into it. 

So I have Karnivool on now and really loving it :) Thank you!

Let me know how you are getting on, and I am sending you all my positive vibes and thoughts. You are so strong and your messages are always so positive. Not too much more to get through. You got this. 

Hi Lays88,

I can’t express how happy I am for you and your loved ones, that your treatment has been so successful. That’s the best Christmas present you and those around you could have. Fantastic news!

You must be run off your feet at this time of year. Don’t worry about responding to my waffle. I know I’ll hear from you as soon as you get the chance to log on.

Right, what’s been happening here…..

Well, last Friday (2/12) I felt like I had been hit by a cannonball, when I received a letter from the hospital, which had dates for four more chemotherapy sessions. I’d never felt so close to giving up on the whole thing. This was such a shock, as after what I thought was my final infusion, the nurses on the chemo ward had wished me goodbye, with a” Hope we don’t see you again”. Which (I hoped) meant that they didn’t want me to have to come back for any more treatment. So that suggested that they also thought it was my last infusion. Also, a few days earlier, I received a request to fill in a survey about my treatment. The accompanying letter started, “As you have now completed your treatment…”, which also suggested I was done with the current course of chemo. I didn’t know whether I was coming or going, but assumed the worst. Anyway, I had to wait until today (7/12) until I could get hold of the oncologist’s secretary, to find out what was going on, as this didn’t match with the original four-cycle plan that I had been told would happen originally. It turns out, after all my stress, worry and depression of the last five days, that it was just an admin error. The additional sessions have been cancelled, and the only appointment I currently have is for a face-to-face meeting with the oncologist on 19^th January. Woohoo! The relief was unbelievable, with the added bonus that I had my last four Capecitabine this morning as well. I haven’t yet received a date for my CT scan, but I do have a blood form for the CEA test. I even had to ask when I needed to get the blood test done, as no one had told me. I must say that the front-line hospital staff have been nothing short of amazing, but the supporting administration leaves a fair bit to be desired.

I never really felt that I recovered properly during my week off, between cycles 3 and 4, and I have been suffering abdominal pains since the second week of cycle three. I spoke to the nurses about it, but they just suggested Buscopan, which had no noticeable benefit, and I’ve just had to live with it. Cold-shock symptoms were massively ramped up this time round, and I still have them, even at the end of the two-week course. Apart from that, it’s just been the standard tiredness, aching and mood-swings. Hopefully all will be good in a couple of weeks, and things will feel a bit more normal again.

Now, music…..

I’m so glad that you have given Karnivool a listen and have met a man with great taste in music. As you say, you’ll have loads of back-catalogues of some great bands to catch up with now. There’s nothing like hearing a track for the first time that just makes you go “Wow!”, and leaves you wanting to hear more. Hard Rock and Metal fans have always been given a bad press, but they are some of the nicest people you could ever meet. I’ve never witnessed trouble at any gig I have been to, as everyone is there for the same thing… the music.

I was looking through my music collection to see if anything I had fell into the ‘Grunge’ genre. I’m not convinced these bands are grunge bands, but according to the interweb (thank you for that one Peter Kay) they are classed as such. From the ‘older’ era, they list ‘Puddle Of Mudd’ and ‘The Offspring’, and from the newer stuff, there’s ‘Three Days Grace’ and ‘Dinosaur Pile-Up’. Can I count those?

Thanks again for your kind wishes. I’m so glad that you responded to my original posting on this forum. We have been through an incredibly tough journey together, and having you to chat with has been unbelievably comforting, and so often very reassuring. Just a few more hops to jump through, but now we can start to get back to some normality.

Here’s wishing you and your family a fantastic Christmas and an amazing New Year!

(I will let you know how I get on with my chat with the oncologist, in the new year)

Hi RCFlyer :) I've finally been able to log in again after a crazy non-stop month of christmas and new year stuff!!! I even managed a short trip to Switzerland!

Happy new year! 2023. I'm so glad to put 2022 behind me and move forward with, hopefully, good health and happiness.

Thank you so much for your kind words - you're right, we have been through so much together and it has been really comforting to have you there to chat to and share this really crazy experience. I'm so so thankful for the outcome and just really hope this is the end of it. My last blood tests were at normal levels again and that was also a huge relief for me. I've been referred back to the surgeon, who I will see in April and I think I will have another colonoscopy around June time.

How are you feeling? I can't believe that administration error. I can totally imagine the huge fright that must have given you. You're already going through so much physically and emotionally, so this must have given you so much anxiety. I felt exactly the same as I came to the end of my final cycle - I could see the end in sight and it really helped to get through it. If there had been any more cycles, I'm just not sure how I would've coped. 

Have all the side-effects cleared up? Mine were also much worse in the 4th cycle. I really think the effects were accumulative, even though I'm sure I was told originally that they weren't. I hope that your stomach pains are gone and you're feeling more 'normal' again.

I'm starting to get my energy back and really have so much planned for 2023 which involves a bit of travelling. I've started a new relationship and everything feels quite exciting again. I just have a stupid niggle in the back of my head that it could come back and I really need to get some support with this I think. It seems to always be there so I can't fully relax or move on from the whole experience.

Music :) You are so right and it's also exciting for me to explore new music so I thank you very much for the recommendations. It so enlightening and just raises my spirits so much. I also agree that hard rock and metal fans are some of the nicest people I've ever met. I spent some time in Finland when I was younger and metal is huge there and they were such friendly people who couldn't do enough for you. The common thread being the music really brings people together.

Yeah I would definitely say puddle of mud were grunge! Those new bands I'm really not sure so now I have more new music to check out

I really hope that you are feeling much better in yourself and have had a great Christmas and New Year. 

This journey has been made more bearable knowing that I can reach out and share with you. You have helped me remain positive and hopeful and I'm really grateful we found each other. I think there is still a bit to go on this journey, but maybe the worst of it is over. 

Please let me know how things are with you.I hope we can keep in contact going forwards.

Take care and keep in touch

Hi Lays88,

Apologies that it’s rather late, but ‘Happy New Year’.

It sounds like you had a lot going on over the Christmas and new year. I’m so happy for you, and to see that you’re life is coming back together so well. Particularly with regards to the building of your new relationship. You deserve it, after what you’ve been through. The trip to Switzerland must have been a fantastic escape, and with more travelling already planned, it doesn’t look like you are holding back for 2023. Good for you!

January has been both challenging and joyful for me.

On the challenging side has been a return to work. Even though I am working from home, and on reduced hours, I am still finding it physically and mentally tiring. It’s gradually becoming easier, but I’ve still got issues with abdominal pains, which mean I don’t always get the sleep/rest I need. I’m hoping to speak with someone from the colorectal team this week, as to whether this is to be expected, and if so, for advice on how to manage it. Also, I was originally due for my meeting with the oncologist on Jan 19^th, but my CT scan didn’t occur in time, as it was arranged for Jan 24^th. Yet again, I’ve had more admin induced anxiety, which I could really do without, and it now means that my appointment with the oncologist isn’t until Feb 9^th. I hate having the possibility of needing more chemotherapy hanging over my head. I realise that I should be more positive, but I can’t help being pessimistic at the moment.

On a much, much happier note, I have become a grandfather – again! My latest grandson was born to my youngest daughter a week ago now. Of course, it goes without saying that he is gorgeous. He hasn’t got much hair, but it’s already more than I’ve got.

On the music front, I have just discovered another brilliant band called ‘In This Moment’. Although they are new to me, they have apparently been around since about 2005, and I have somehow managed to miss them. Currently I have a track of theirs called ‘Big Bad Wolf’ pretty much on permanent repeat. It’s very loud and angry, so it’s fantastic in helping me unwind and let off steam. The best kind of medicine!

That’s about all I’ve got to report for now, but I will post an update following my meeting with the oncologist next month.

You take care, look after yourself, and I wish you and your loved ones every happiness for 2023 - and well beyond.

Hi Lays88,

I hope that you and your loved ones are all doing well.

I'm not really replying to myself, but I've just dropped in to give you an update, following my meeting with the oncologist this week.

Well, my meeting was a bit of a double-edged sword 

First the good news is that the chemotherapy appears to have worked well, and I am not going to be subjected to any more sessions, which is a huge relief. Woohoo! So now, I'm officially on the five-year monitoring plan, with all the associated regular prodding, poking and probing - 'The Three P's', as I like to call it 

Following that with the not-so-good-news, it turns out that I now have a nodule on my left lung 

They have no way of telling if the nodule is benign or malignant, so I have now been referred to another specialist department for investigations. I believe they will initially need to take a biopsy from the nodule (somehow), to work out what they are dealing with, but I have no idea what the investigations and/or subsequent treatment might involve after that. 

Looks like I am going to be making the most of the NHS hospitality for a little while longer at least. They are wonderful people, but I really was hoping that I wouldn't have to see them again quite so soon.

Wishing you all the best. Take care, and stay well.

Hi RCFlyer,

It's so great to hear from you. I did read your email from January but only now getting the chance to reply.

It really sounds like the admin side of things has been such a pain and cause of unneeded anxiety for you. I'm not sure if you got a questionnaire to fill in about your experience of cancer treatment but this could be something you suggest needs improving. I just completed mine recently.

You've returned to work already - is it still tiring for you? Are you glad to be working again? I'm still not back but will be going back mid-April. I'm a bit worried about having extra stress in my life again so I'm hoping to achieve a balance going forwards with work and life.

Huge congratulations on becoming a grandfather again :) That is just wonderful news and I'm so happy for you. It must have been such a lovely feeling. I hope you are getting to spend lots of time with him :)

I agree with the music being the best kind of medicine. I always put heavy metal on loud if I have some anxiety or internalising too much, and it really is such an amazing release. And thank you - another band for me to check out.

So to your current message - I'm really sorry that you still have this hanging over your head and can't move on just yet. I will keep you in my thoughts and send positive vibes. It might just be a cyst, which I had when I had my first scans last summer so I really hope it turns out to be nothing to worry about. BUT it's amazing to hear that the chemotherapy appears to have worked and you don't need any more sessions. It's the best feeling to be able to put some of it behind you and have some normality in your life. 

When will you have your next checks? I'm seeing the surgeon in April and hopefully I'll know then what my plan is going forward.

Thank you for keeping in touch with me. It still feels like such a journey. Keep listening to the music LOUD and try to stay positive. I will be thinking of you and really hoping the best for you. You have been such a source of comfort to me and you deserve to be able to put this all behind you.

Enjoy the time with your new grandson and I hope you are able to enjoy some of the brighter days we've been having.

All the very best to you , take care and speak soon :)