The Team Tibbs Results are in...

[Tibbs]

After it being all quiet on the Tibbsern front for the last few weeks I was at Charing Cross for my Oncology follow-up this week.

Results were a bit mixed. The prognosis is still very good, it's just not as good as I'd been told previously.

Turns out my cancer wasn't clear cell, which is the 'good' kind apparently, but it's multilocular clear cell which has a less good prognosis (but still not bad).

The side effect of picking the cancer up so early is that it was too early to see if the cancer has spread. They think it hasn't, but I'm going in to have an MRI of my head and a CT scan of the rest of me to see what's what. They don't want to use contrast, as that isn't good for my kidney, which makes it a bit more complicated.

I have another appointment in 6 weeks, so the scans should come through before then.

[Dixie1]

Hi Tibbs

Sorry to hear that - it all sounds a little vague and therefore not very reassuring. I'm glad they still think the prognosis is very good though. Keeping my fingers crossed for you that all shows to be clear. In the meantime, I hope that you manage to stay positive and have a lovely Christmas.

So, who is cooking?? Making anything amazing?

[Slow learner]

Message removed

[Tibbs]

It is encouraging, and I'm happy.

I'm in the position where I thought I'd won the Euromillions and I only won the regular lotto. I'm still pleased of course, it's just tinged with disappointment.

The bit that concerns them is that there's no research done with immunocompromised people and this form of cancer, so they're in the dark a bit.

Ah well, at least I'm interesting!

[AmandaClare]

Sorry it wasn't quite the all clear you were expecting. Sounds generally encouraging though.

Have a good Christmas!

[Tibbs]

Christmas was great - I had a week of it rather than 36 hours last year!

I have my MRI on the 31st and the CT Scan I need on the 2nd, so all systems go...

[jooles]

Good Luck Tibbs. Fingers crossed for you on 2nd!

Jooles

[Dixie1]

Glad you had a great Christmas Tibbs and very best of luck with the coming tests!

[Tibbs]

The MRI was ok on the 31st. Made it to Charing Cross in plenty of time and they stuck my head in the machine. 20 minutes later it was all done. I almost fell asleep!

The CT scan today was a bit of a clusterfudge.

I got the call before Christmas and they scheduled the CT scan at Charing Cross first thing in the 2nd. I asked if it could be at HH, as I already had a Clinic appointment that day at Hammersmith. Got told, no, needs to be at Charing Cross as that's available and it needs to be done soon as I have my follow-up oncology appointment in Feb.

Due to the trains I was rather early, and got to CC at 7:50. Waited until 8 for the desk to be open, at which point they tell me the the CT scan is at Hammersmith after all...

2 buses later and I'm up at HH. Almost late, but not quite. CT was very easy and I was on my way to clinic. 3 goes to get blood out of me (I must be stodgy with all the christmas cake I've eaten!) and seeing the consultant is no news. Back in 6 weeks, hopefully to get my annual biospy MOT and I can start to get rid of the pred.

In other news, despite doing no evercise and eating a lot over Christmas, I stayed the same weight. Still, back to the running this weekend I think.

[rheaybou]

You will have to share with me an exercise tips you have. It's just over 10 months for me and I have gone from 71kg to 88 kg in that time....

I feel like a woman, nothing fits!

[sanela]

I feel like a woman, nothing fits!

That is the best line I've heard in a long time, still laughing…my clothes actually fit for a change despite the holiday binge…

Tibbs, is your biopsy scheduled because of the many issues you've had or is the annual a new introduction at HH? I've only had two, one to confirm the rejection and the next one to confirm all clear, both in my first year. One of the consultants (I'm not his biggest fan) mentioned a few visits ago, how I should have had one at 3 years, something they are trying to introduce for all patients. I said I need to think about it but in truth, I don't really want to have a biopsy without a good reason for it. I've been stable ever since I was clear from the rejection so, if it's not broken and all that…Nobody else mentioned mentioned biopsy to me ever since. If it was that important you would think they would get in touch etc.


Sanela

[jooles]

Hey Tibbs - what a kufuffle! Running?! Wow - after taking down all the XMas decorations today, I'm sitting with (2nd) glass of wine - feeling decidedly like a woman!!!

Hoping all goes well for you... and the weather is decent for your run!

Jooles

[Tibbs]

They also upped my BP meds this week - I'm back on the Beta blockers though a different one, Metoprolol rather than Atenolol which hopefuly won't interfere with my heartrate. Having said that I am feeling it a bit, so I may hold off on the running and just go for a walk on Saturday.

It was intimated that I have a biospy once a year, and that I'd definitely need one before they brought me off the Pred. I forgot to mention it this time, so I might ring up as I'd like to get in the queue for one before my next appointment since 6 weeks it a while away.

In other, food related, news - I have spent my Waitrose Cookery Course Vouchers I got from my parents on a Sauce course (a new one that went in I think so it's in 2 weeks, how exciting!) and a Fish & Seafood course in April. Very very excited!

As for losing weight - more exercise and no snacking. I also try to choose more sensible options when I go out. Mashed potatoes instead of chips, Tandoori Mixed Grill rather than curry in sauce and rice instead of nan, that sort of thing.

Getting fit I'm using a Couch to 5k programme. There's an NHS one you can get as a podcast if you have a smart phone, but I use the Zombie Run couch to 5k app. I'm up to week 5 out of 8 I think, though I may repeat Week 4 as I've had a few weeks off. The story is really engaging, and I want to go out running again to hear the next installment!

When the January rush dies down I'm going to join my local gym. Whilst running is a good way to get fit, the best way to lose weight by far (in my experience) is to do weights. I'm aiming to run 3 days a week and do weights 2 or 3 days a week from Feb.

Got the Bridges walk again this year, and I want to finish it feeling slightly less like death...

[AmandaClare]

I'm with you on biopsies, Sanela. The risk levels they quote seem relatively high - can't really remember but is it 1/300 risk of a serious problem?

I went 20+ years without a biopsy (after a couple in the first 2 years). Then they did one as my creatinine had gone up a bit. The neph's attitude was that while it was borderline whether I needed it, it was always helpful to have a baseline for the future. It was an alien way of thinking for me.

[Tibbs]

That's a good point re: the risks of biospy. I don't know whether the annual biospy was just for me, or for everyone. I'll ask next time.

As for risks, from what I've read the stats vary. Most say a 1 in 200 chance of needing a blood trasfusion, and between a 1 in 400 to less than 1 in 1000 chance of needing surgical intervention.