Thank you Twink. I need to make a few notes as sometimes my mind just goes blank. I don’t see the oncologist very often so must make the most of my time with him.
That is a good idea! Seeing a specialist always makes you feel anxious, so taking a list of questions with you will make sure you don’t forget anything that you wanted to ask.
I am sure everything will go smoothly, but I would mention that you have been excessively tired recently and see what he suggests.
Good luck!
Meanwhile I’ve received letters today for further CT and MRI scans in July and August.
I’ve just had two scans! Why can’t they leave me alone or at least have the courtesy of explaining why these are necessary?
Do you ask them Ffosse?
I phoned up and they’re meant to be getting back to me, but I think it’s too much: two cancellations of my methotrexate and another two scans when I’ve just had two.
As it stands, I won’t be going to either of them nor will I be undergoing a 4 day methotrexate treatment after they’ve cancelled it twice.
I’ll go to my chemo next Wednesday but that’s it, that’ll be me finished with all treatments and procedures.
If you don’t mind me saying, I think I would insist on a long talk and proper explanation of everything first.
Once you are armed with a proper explanation and understanding of the facts, it’s then can you decide whether you want to continue or not.
You also need to be clear what will happen if you discontinue, and I don’t mean just healthwise, I mean will you be able to get help in the future again if you cancel your care now.
Think very carefully, Ffosse.
I’m not sure that they are helping me. Last week I packed my bags and went to (what I thought) was a 4 day in-patient stay. They knew I’d had a chest infection; they knew what drugs I was taking, so why cancel it then? Then I was told to come in this Friday. Again, they knew what day and date my chemo was next week so why come up with the excuse that it was too close to my chemo so had to cancel?. At least this time I had only packed, I hadn’t actually left the house. The nurse I spoke to told me the Consultant will phone me this afternoon but I’m not holding my breath.
Beginning to think that Realist might just be right…I’ve had so many scans, at least 3 each of CT and MRI - I thought the last ones were just that: the last.
Ffosse, you’re understandably upset and frustrated by the way the hospital have treated you, but try not to make any hasty decisions. Bear in mind that all these treatments are for your own good and the scans are necessary to see how well the treatments are working.
Not that many scans - I’ve had it with the sheer number.
Nothing like the internet to have a good rant on; I was pretty upset.
The Consultant phoned me and apologised for today’s cancellation - he had forgotten when my next chemo was.
He then explained that they’d like me in for the methotrexate treatment on Wednesday the 11th of July (I’m still not going to unpack my clothes as they are clean and ironed).
The MRI scan at the end of July and the CT scan at the beginning of August are end of treatment routine scans. Apparently they always do this when treatment is completed, I didn’t know this. Then I see the Consultant on August 9th.
I’ve got my nurse on Monday for more blood and my last chemo on Wednesday so I should feel good that the course is finally finished (apart from the hospital stay).
It’s just when my mind is psyched up for something (like going into hospital) and it’s suddenly cancelled twice I feel a bit deflated. But I’m glad I got an explanation of what the scans are for - they will be the final end of treatment scans.
Meanwhile I’ve booked a Tesco delivery for tomorrow and am defrosting some bolognese for tonight’s meal. I’ve even got some of that dried grated cheese.
So pleased to hear that you seem to be sorted Ffosse and good of the consultant for explaining things for you. A few weeks and it will all be behind you and you can build up your strength again.
Yes, I can’t wait to have more strength again. I got very tired this afternoon but resisted going to bed. I should sleep well tonight as I’ve been up 'til 7.
Hope you are doing OK today, Val J.
Apart from feeling very tired, I’m doing ok thanks Ffosse, but I’m not sleeping very well at night at the moment. Tonight I decided not to have my usual glass of wine with dinner to see if that makes a difference. My bedtime is usually around 10 pm these days.
Just checking up on Val and Dreamy.
Sending my thoughts and prayers as always. Lots of wonderful support on this thread.
I’ve had an OK day so far. I awoke at 6 and got up. By 10 I was so fatigued that I went back to bed until 1pm.
Just watching the football now and awaiting my Tesco delivery. I’ve no food at all in the house - was down to my last weetabix this morning. It’ll be nice to have a fridge full of food again.
I’m feeling good today, it’s been a good weekend, really, and am looking forward to my last regular chemo treatment on Wednesday.
The nurses there are all really nice and some of them remember me from 2 years ago. I also know that I will be finished by about 1 or 2pm with fewer drugs to infuse than before.
I’ll still be getting a taxi there and back as I’m not up to walking to the bus-stop; it really is some distance from my house and uphill all the way. But that is what my PIP is for (I should have applied for it 2 years ago people told me but I kept putting it off). What puzzles me are the taxi-fares.
Sometimes it’s £7 or so there; other times it’s around £11 and it doesn’t seem to matter whether the roads are busy or not. I always use the same taxi service and I’m wondering if different drivers have different rates set on their meters, if that is even allowed.
Pleased to hear you’re having a good weekend Ffosse. My weekend is going well too and although I’m still feeling tired, I’m managing to get jobs done and help cook the meals. I don’t know how many more chemo cycles I have but may know more when I see the oncologist on Tuesday. My next chemo is also Wednesday.
Good for you getting a taxi, we had to do the same a couple of weeks ago when we were without a car for a few days.
Good that you are feeling a little less exhausted and are up to doing normal things.
I hope you get good news from your oncologist. How many treatments have you had already? With my programme I think it’s just been 6 sessions, 1 every 3 weeks. They vary so much from person to person.
I’ve lost count of the chemo sessions I’ve had Ffosse but just counted up and I think I’ve had around 16 altogether. I started last October and have them two weekly but have had a couple of short breaks and a longer break after the chemo drugs I was allergic to!