Start date and revised staging

Hi Beckym16798147d , I’m really sorry to hear you had such an awful day yesterday, the episode with the CT scanner was enough without the sudden disclosure of a revised staging! I’m not surprised your head felt the way it did, the whole day combined would have been enough to derail most of us I think. I hope you’re feeling a little better this morning. From what I see in your post it’s the discovery of a possibly affected lymph node that has changed your staging. 

Regarding the oramorph & driving a quick Google advises not to drive for 5 days after first starting taking oramorph. I found some information from the NHS, I hope the link has worked! https://www.uhcw.nhs.uk/download/clientfiles/files/Patient%20Information%20Leaflets/Medicine/Palliative%20Care/Legal%20Information%20on%20Driving%20and%20Medications.pdf

Sending lots of healing thoughts your way.

Nicola 

Hello Becky,

Sounds like you had a horrible time yesterday, and I hope you are feeling a bit better today. I wasn't given the staging detail you have had, but if it's any help, I too was T2 N1. It's very common to have some cancer in the lymph nodes, but I believe the chemoradiation is really effective on them, as well as on the main tumour. I found once I had had a few sessions my symptoms declined quite quickly, so I hope you get some relief once you are started.

I think you should check with medical people about driving - I assume you mean in relation to the oramorph you have been given, and I'm sorry I don't know that.

Stay in touch and let us know how you get on xx

Hello Becky,

That sounds like a very traumatic day on many levels. Mind and body both took a battering and can only hope that you have been able to rest up and recover a bit today. Must have been awful for you and so sorry that you had to deal with the contrast reaction on top of revised diagnosis. 

I hope that the Oromorph gives some relief from the pain and can see that you’ve already had some guidance on driving. 

If it’s any consolation at all, mine was T2N1 but responded really well to the chemo radiation treatment.

Just so sorry for all that you went through yesterday and big hug to you. Xx

thank you for all the replies 

I think it was just a bit too much .. I drove over on my own .. took about an hour and a half to get there ... then spent roughly six hours there with the tests and everything and didn't really have time to eat much ... then it took two hours to drive back due to horrendous weather on top of that! I was so worried that judging by my reactions yesterday I wouldn't be able to cope with the treatment but putting it into context today I will have hospital transport there and back and its only going to be an hour in the department once there so I'm sure once I'm up and running I'll drop into a little routine  

Becky - that sounds completely overwhelming! Once you are more familiar with the treatment and the places and people you'll be meeting regularly, you'll start to feel much more 'Yes, I've got this'.

And you have us here too. xx

Hello Beckym16798147d 

Sorry, another post that didn't come up on my feed.  What an awful day you had.  We are always asked about reaction to the contrast and I have been most fortunate, but it must have been most upsetting.

And the revised staging too must have been a blow.  I had several lymph nodes involved and to date (almost four years) everything is clear.  I am not sure if the lymph nodes are treated as a matter of course during radiotherapy 'just-in-case'.

As you are taking Oramorph, I hope that you have someone who can drive you, and failing that, a lot of hospitals provide patient transport.  I would make enquiries as soon as you can.  I do hope you get this resolved.

Gentle hug

Irene xx

And I missed your later post, so pleased that there is hospital transport.  Take a pillow with you on the journey, who knows, you might even be able to snatch a nap.

Hello Becky,

So sorry that you were on your own for all of that. What a physically and emotionally overwhelming ordeal. I can only imagine that you’re still recovering.  Glad to know that you have hospital transport organised for starting treatment. Sounds like a long round journey and it’s not the best time of year weather wise,  so hopefully that will let you focus on your treatment.

Hoping you have been able to rest up and recover from such a difficult day. 

xx

Hi Becky

Sorry to hear that you had a really tough day, the whole period before treatment starts is a real time of uncertainty but I found that once treatment starts you feel a little more in control and less anxious as you get into a routine, the radiotherapy treatment itself is painless and doesn’t take long each day. Although the side effects seem to be variable and individual to each person with some common threads.

It's not uncommon for staging to be adjusted before treatment starts as by this time all your scans and tests have now been analysed by the team. Irene makes a good point about the lymph nodes being treated as a matter of course, as I understand it (I’m not medical) there is a very high risk of spread to local nodes and even with PET scans etc it can be difficult to detect tiny amounts of spread so to cover that risk they target those nodes in treatment.  

My experience was that at my final consultation before treatment started I was told that they now thought there may be some spread to one of the nodes but it didn’t make any difference to treatment as the node had already targeted.

Good to hear you now how transport sorted as they will save on the stress of travelling each day.

Hope all goes well with your treatment once you get started.

Monty xx