Soon to start chemotherapy

Hi Lays88,

I feel terrible that I haven’t responded sooner, so I hope that you have had plenty of good stuff going on, and you didn’t notice my ignorance. Most of all, I hope that you and your family are all keeping well, and managing to entertain yourselves in this seemingly never-ending rain!

Although I was promised a gentle return to work, things have been quite hectic. However, I am strangely enjoying being back at work. I’ve been moved onto a new project, and back with some familiar (excellent) colleagues. It’s nice to talk to face-to-face people again, and have some normality back in my life.

I can’t say that I am having the best of times with (what’s left of) my bowel though. It gets very painful at times, in the area of the operation, and movements (sorry!) are somewhat unpredictable. I’ve been trying to get hold of my GP, which isn’t very easy, as he has recently put me on some blood pressure medication, which I am pretty sure is upsetting things. It’s not exactly the ‘feeling much better’ I was promised before the operation, but it would be nice if it could be managed a bit better - at least to the point of becoming more predictable. I’m not sure that I will get to see my colorectal surgeon again, as I have now been transferred to the lung team, but I should obviously be undergoing regular tests and check-ups under my oncologist.

On the lung front, the medical team have decided that the nodule is cancerous, and I will be going into Guy’s hospital for an operation, in a few weeks. I don’t have a date yet. All I was told that it would be in about 4-5weeks (now 2-3weeks) and ‘after Easter’, which is only a week away now anyway. The operation itself doesn’t sound too horrendous. Especially after what we have both already been through. It’s a laparoscopic procedure, so no big holes, followed by a three-day stay in hospital and two weeks recovery at home. Until they do a biopsy on the offending lump, they are unable to tell me what follow-up treatment I will need. I’m truly dreading the prospect of any further chemo.

On a lighter note, I’m still loving my music LOUD, and seeking out new bands. My new grandson is doing well, and just getting to the ‘smiley’ stage now, which is always lovely when you are on the receiving end. And hopefully, there’s some motorbike friendly weather on the way too, and I can take it out of its winter cocoon. That’ll be the perfect remedy. Well, I can hope!

Take care, have a great Easter, and don’t eat too many choccy eggs! (I’ll be doing that)

Hi RCFlyer,

It is soooo good to hear from you. I try to check this every so often to keep in touch with you. Life has been extremely busy! I too have returned to work - I started supply teaching to try to have more flexibility and it seems to be working so far  I'm glad that you are enjoying certain aspects of being back to work. Has it calmed down or still hectic? The most shocking thing for me was the extreme exhaustion from being back! I'd forgotten what 'work tired' felt like!

Did you manage to get through to the doctor to change your blood pressure meds? I really hope so. It's getting so difficult to see the doctor and get the care needed. Very worrying. I had an appointment with my surgeon at the end of April and he told me that I would have a colonoscopy and ct scan soon and blood tests every 3 months for a year and then maybe a ct scan in 2024 and 2025. It doesn't seem like much monitoring but I guess it depends on the type and stage the cancer was. Maybe. Do you know what your monitoring will be? I'm really sorry that the nodule in your lung is cancerous  I can just imagine the pure disappointment and frustration and the range of emotions. How did they decide? Just from scans? I guess in a way it's much better for them to remove it anyway. Since you wrote last, you may have undergone the surgery. Please let me know how it went/goes. I will be thinking of you and sending you all my positive thoughts.

I must say that I am scared of the colonoscopy. I haven't got a date yet but life seems to be getting back to normal. So I totally understand the fear of further chemo. I remember that last cycle and I was so fed up and weary that I just couldn't understand how people cope with 6 cycles or more. The good thing is though that you know you can do it, you know what to expect and can prepare for it. If it is needed. Which I hope it is not. Try to stay positive and focus on the good and happy things.

Did you get to take your motorbike out? There was a few good days but back to rain. I'm so pleased to hear you're still loving your LOUD music! Me too. I am going through a Rammstein phase! 

Aww your grandson sounds lovely and someone to bring out the happiness and positivity for you. I hope you get to see him lots. My children really keep me focused and they are truly my joy (most of the time!!)

I really am wishing the best for you and that everything goes well and smoothly. And that you are able to put this behind you soon. Look after yourself and keep me updated.

All the very best RCFlyer and thank you always for your support and care.

Talk soon xx

Hi Lays88,

Great to hear from you again!

I’m writing this message as I lay in a Guy’s hospital bed, with sunshine streaming through the windows, looking at the big 80's telephone shaped building thingy – the name of which slips my mind at the moment. I had my lung op yesterday, and luckily so far, it has been nowhere near as traumatic as the hemi-colectomy. I’m still not entirely sure what they removed, as they listed several options depending on what they might find when the went in. Hopefully the consultant/doctors will be around this morning and I will find out what’s been going on. Disappointingly, it looks like I still have more to come, as they spotted another nodule on my right-hand lung, in the pre-op CT scan results. What does worry me  bit, is the fact that the consultant mentioned the possibility of the dreaded chemotherapy. But if I do need any, that won’t happen until the right lung is sorted. Despite all this, my spirits are high, and as always, the NHS staff are excellent, and looking after me brilliantly.

Right, enough of my woes.....

It’s fantastic that you are enjoying getting back into work. Especially as it’s something that it sounds like you really enjoy, and which also offers you the flexibility you need. It must help out tremendously when you have young children of your own. I hope they are doing well too, although you certainly must have your hands full. I have been enjoying my new work project. There’s a lot of people on the project that I’ve worked with in the past, which made it a lot easier to settle in. I hadn’t realised how much I had missed working with ‘real’ people, after working at home through covid, and then going through all this malarkey.

I don’t know whether it’s because I have been moved to another cancer team, but I have heard nothing of my monitoring plan. The only checks for the bowel cancer were the CT scan and bloods, just after Christmas. I’m hoping that someone has got things in hand. Once I’m out of Guy’s, I’ll get in touch with the Macmillan nurses again. I’ve no doubt that they will be able to help. It looks like they have a pretty comprehensive plan in place for yourself. Although the tests are probably not the nicest, at least they will give you much needed reassurance. You’re in good hands.

I have managed a few commutes to work on the motorbike – only on the dry days, of course. I wouldn’t want to get it dirty. I still haven’t managed to get out for any pleasure rides ye. I joined an owners club when I got the bike, last September, but I haven’t had chance to meet up with anyone yet. Just biding my time for the ideal mix of health and weather, then I’ll be out terrorising other road users.

Love a bit of Rammstein! Although I have a tendency to worry what they are actually singing about. “Du Hast” is always a good one for clearing the cobwebs. I have listened to their latest album, but i only had one pass, so I need to revisit it. I’m still hooked on “In this Moment”. I can’t stop playing the “Black Widow” album.

It’s genuinely so great to hear that you and your family are doing so well, with everything gradually getting back to normal for you. I did chuckle at the little ‘most of the time’ qualifier your added to your note about the children keeping you focused. Where would we be without them, eh? My daughters have been an amazing help throughout my tribulations. So they did come in useful.... eventually!  

With everything happening around me in hospital, I had to interrupt my writing of this message, but the upside is that I am actually being allowed to go home only a day later.....which is now! Result!

Looks like I’ve got a while new collection of laparoscopic access holes in my side, and some new aches and pains, but otherwise not too bad so far. I’ll have to dream up  some heroic tales of gun battles and sword fights, to make all the scars I’ve collected sound more interesting. From what the surgeon told me, it also sounds like I could even be back in a few weeks, for a matching set of holes on the other side. I think that I need to tell them to stop looking for anymore dodgy.

Well, hopefully I haven’t missed anything out, or bored you with too many of my woes. Enjoy every minute, with family and friends...... and even some of this nice weather we seem to be getting at the moment. Stay well, and I hope to hear from you soon.

Hi RCFlyer! 

It's been a long time and I must apologise. Life got incredibly busy.

How are you doing? 4 months now since your op - have you recovered well? Have you got some updates regarding any further treatment needed? I do hope you are doing well. I always think that I must write to you and finally have a quiet Sunday to do so. Let me know how you are doing. I smiled at your description of your view from your hospital bed, I know what view you mean and the name also escapes me.

I've been working alot and had a very busy summer. I'm not complaining though - I was afforded the opportunity to do some traveling in Europe with my boyfriend and it was amazing. We visited so many countries in a short space of time and had the most wonderful experiences. Supply teaching is still working great for me and I am able to balance work and my own children quite well. It's a little full on at the moment and I'm hoping that in a couple of weeks I can go back to 2-3 days a week rather than 5 days per week. How is work for you? Are you still riding your motorcycle?

In terms of my health, I had a colonoscopy in August which came back all clear which was fantastic. I was so nervous beforehand. Scared in fact and I was even rehearsing what to tell friends and family if the worst was found. But luckily it was the best result I could've hoped for. I feel extremely fortunate and now after a little bit of indulgence over the summer, i am trying to adopt as healthy a lifestyle as I can (not that it was awful before, but just a few small changes).

It's so wonderful to hear that your daughters have been a huge help  (I giggle at 'they came in useful ... eventually!!) It just makes everything a little easier to bear. My mum was the same - she was just completely there for me. And when I look back - I just don't know how I would've done it without her. Unfortunately I can't say the same of my two sisters Sadly they never offered to support or help me throughout my chemo treatment when things were truly tough and they didn't offer to give my mum a break also. It's really only dawning on me now a year later. The people who I thought I could depend on for help have shown their true colours. It has made me a little sad but truly i need to disconnect from those negatives and focus on positive vibes in my life only. Another thing I am working on currently!!

Rammstein still a big playlist for me. I'm learning German at the moment and have checked the tranlastion of their lyrics and I can safely say they are very deep and dark as a heavy rock band should be but nothing to worry about!  So I listened to some In this Moment as I wrote this and I really liked it! So now something else great to listen to LOUD!

Those war wounds of yours - they tell the story of your bravery and determination to not give up Thank you for continuing to communicate with me and share your story. It really is always so great to hear from and read your updates. You are so inspiring to me. I hope that I can continue to be a support to you.

I hope the heat wave hasn't been too unbearable for you. I can't say I've enjoyed working in it but it was nice yesterday. I hope to hear from you when you have a chance to write. Look after yourself. You've got this.

Speak soon

xx