Bowel cancer returned

Hi Lou, 

We didn't really pick the best time to get prompt medical attention with Covid demands as they are did we? But at least now you are on, or about to go on the slab. Look past it - to Christmas or whatever  you may be looking forward to and abracadabra, it's reality! Simples.

I rattled my cage again on Friday and was assured by the colorectal nurse that as soon as she learned of my scan results she would let me know. Its on my mind 25 hours a day as I'm sure it is with you. Meanwhile I'm told to keep taking the 4 x 2 daily paracetamol. It sort of works but that's not the point. I can now resume my daily 2 mile walk that I had to stop for a couple of days cos of the pain. I'll ask about cannibis oil, thanks.

My parents have had their covid jabs so I guess my turn isn't too far away. I guess that after I've had both that I may cautiously try 'out there' again. The pub, maybe..

I've been quite open about this stuff to all except my parents and son. I want to learn of my options and their respective prognosis before I say anything to them.

London now looks like going into what's now called Tier 4. That's serious - hopefully the too common numb - brains will get the message. I'm even thinking of declining my Christmas invitations with all, including family.... my covid jab being just around the corner it would be silly to take chances now.... I haven't given up hope of being one of the fortunate souls that survive for ages after being given a gloomy prognosis. Smiley face.

Bon courage.

Gaul. 

Hi Gaul, 

Sorry for the late reply. A few things have been going on and I haven't felt much like writing. Anyway I feel OK now. Glad to hear you are being proactive and "rattling your cage ". I also have done that a bit this week. I called Basingstoke hospital and spoke to a nurse there who was really nice. The copy of the letter sent to my surgeon came and I was shocked to read that it stated I may have more extensive disease than can be seen on the images. Not nice to receive that just before Christmas.

I am being discussed by the MDT today at my local hospital so hopefully I'll hear back from them soon.

Good that your parents got their covid jabs. I hope you will have one soon also. My parents haven't been offered one yet but atm they are in tier 2 so it may not be for a while. Yes we are in tier 4 also which is pretty bad news. My downstairs neighbour has tested positive and my younger sister is isolating. So far I am OK. 

The colonoscopy went OK, I had sedation because I am a wimp. Lol. I was impressed that you are given a pair of big blue shorts with a hole in to wear to protect your dignity a bit. 

I hope you get your scan results soon. I am so sceptical of mine and really want a second opinion, maybe a PET or MRI scan. 

Tried a small brandy and ginger the last few nights it was really nice and I slept very well. 

Don't give up hope Gaul, I am not giving up yet! 

Hi Lou, 

Coincidently I saw my Oncologist now that he has my scan results. Brother Simon came with me at their recommendation. To the point, I'm inoperable and I've got 3-6 months without, or double that with chemo. I'm opting for the latter mostly because it gives me a better chance of seeing my son in Stockholm again, bearing covid in mind.

I guess I only heard what I expected to hear and I feel pretty calm and matter-of-fact about things. The only thing that did alarm me a bit was when they weighed me I'd lost 10 kg since the last time. Reality check.

But actually Lou, I haven't given up. I have no religious belief whatsoever but fate may just have decided that my time has not yet come. When I was 12 I was within an inch of my life, choking as a reaction to tetracycline. When I was 21 Barts hospital said I had rheumatoid arthritis. I haven't. So all doesn't have to be what it seems to be. Maybe we should hold hands and go to Lourdes :-)

I've just spoken to Stockholm about all except my predicament. I shall drip feed Wil and my parents after Christmas on that. That'll be the hardest part of all for me.

• I conceitedly tell you that I am a storyteller - all of them true, only a couple written down. I'm told that they should be recorded as my legacy. I wish I had a secretary - I'm a one finger typist.
• Happy Christmas Lou (you too Court!)

Gaul. 

Hi Gaul, 

I am glad to hear you had your brother with you for your results. I had my sister with me for the last apt with the oncologist and I am glad I did as I wouldn't have been able to cope otherwise. I didn't hear anything back from the meeting today so don't know if it's good or bad news for me. I suspect it's the latter. They seem to be of the opinion that I am inoperable also, so have to go ahead with the horrible chemo for 3 months, then another scan. I just want to know that an expert is reading them, because I am sceptical unfortunately. I can't help it, I like to see the evidence infront of me. The surgeon who did the colonoscopy said he may be able to remove the tumour that has regrown on the outside of the anastomosis site of the bowel. He said it is trying to grow inside!! Scary. I have been having pain in my shoulder for the past month so hopefully that is not suspicious. I turned my mattress over and was lifting heavy cases so hopefully it was that. 

I am praying now like I never have before, and including you and others on the site in my prayers. My mum is Irish Catholic so I was brought up in that religion. Yes I would love to go to Lourdes. 

I hope you can have a good Christmas and maybe you will put some of your weight back on. 

Yes it sounds like a plan to slowly tell your son and parents. That is definitely the hard part of all this. 

Xx 

Hi Lou, Happy Christmas to you, even if it sounds a bit hollow. I've had quite a good day, talking to Wil in Stockholm plus a couple of old friends in Australia. Then I had Christmas lunch with brother Simon and partner then to parents for pressies. I've told all for several years now that I won't be buying anything (at all) but will give money to Taunton homeless... but they always buy me something. Oh well.I did grill my Oncologist on options, odds and stuff but unlike you (it seems) I accepted what I was told. I've been brutally straight with all except Wil and parents about my, um, predicament because I don't want anyone to be wary of talking to me, thinking that they have to be careful what they say. Wil and parents will be a daintier business. 

I too worry about every little ache and pain, attributing it to the cancer and trying to reason it away to something that I've done - like carrying my poor old dog up the steps that lead to my house. I did my two mile walk today, paracetamol assisted but I know I must stay as fit as I can for what's to come. 

Thanks for your prayers - regardless of my non belief, the sentiment is nevertheless appreciated - thankyou! 

Chin up. 

Gaul

Hi Gaul, 

How are you doing now? It sounds as though you had a reasonably good Christmas. Did you manage to eat some Christmas goodies and put on a bit of weight ?

It was a very strange one for everyone I think this year. I had a good time at my sister's, and eat a lot and had a few glasses of wine, we had a good few walks, did a large jigsaw, and tried to forget about the C word for a couple of days.

I haven't managed to see my parents yet but hopefully in the new year I'll go up there, if we ever get out of tier 4.

I am still praying and my mum said their priest said a mass for me so that can only be a good thing.

I have a GP apt this Thursday so I will ask if he can refer me to a specialist for a 2nd opinion regarding the HIPEC surgery and a lung specialist to get to the bottom of what is showing on my lung. I am sceptical as neither of the 2 doctors I saw could see the node or spot which was mentioned on the CT scan report. 

Take care of yourself, 

Hi Lou, 

I did have a reasonable Christmas thankyou, despite the two big 'C's and despite being a grumpy old man. I've lived alone for 20+ years and like it so having extended periods alone over Christmas was no hardship. Simon and Mary Louise had their son (my nephew) for the period and I don't know where he's been so I declined invitations to eat but I did go to a  masked-up thing with them to see mum and dad. I also had lots of WhatsApp chats around the World which really gives me a lift. 

I'm glad to hear you a good time with your sister despite all. It's not very nice for family and friends who know the predicament we're in but not so much what they're supposed to do for the best - I know this having been in their position with my best mate in Australia.

I'm in little pain and I feel reasonably well apart from a feeling that I've pulled my stomach muscles - which I haven't. I also push myself to eat and always feel that I could sleep on a clothes line. I'm due a scan mid January to determine my Chemo programme. I promised my sons mother that I would do this so that I may see him again. That's the reality of this bloody desease.

I will wish you a Happy New Year Lou - ok, it'll be a bit tricky in the circumstances but don't forget, when the going gets tough, the tough get going. 

Toodlepip. 

Hi Gaul, 

Apologies for the late reply. HAPPY NEW YEAR if it is not too late to wish you that. I have been having a bit of a break from the big C while I can. Anyway back to reality and dealing with it now. I had a good New year at my sister's house. I could see all the fireworks from where she lives as it is quite high above the town. Good to hear you had a reasonably good time over Christmas and New year's. I haven't been able to see my parents yet as they live 1 and 1/2 hours drive away and under the current rules we are unable to drive there.

My second opinion has come through and they are going to send me for a CT PET SCAN fairly soon. I hope before my chemo starts next Friday. I admit that I am getting quite anxious about it now. I do feel OK and have even put some weight on, just so that if I can't eat much during chemo I won't be too thin and weak. 

Going for my daily socially distanced walk later with a friend , did 6 miles one day last week and been having a longish walk everyday now to keep fit. 

Best of luck to you, 

Keep the faith, 

Lou Xx 

Hi Lou, 

Nice to hear from you, thanks for your New Year good wishes - and don't apologise, just reply when you feel like it. Smiley face.

Coincidentally I'm going for another CT scan this Wednesday and an appointment with the Oncologist the following Wednesday. As my previous CT scan was only about six weeks ago the Oncologist will be able to measure rate of change and stuff - and then give me my options (which won't include more surgery as I'm past that point. I think I'm prepared for bad news but I won't know until I get it.

On a day-to-day basis I feel reasonably ok, just a mild feeling that I've pulled my stomach muscles - which may even be true as I have to carry my poor old dog up the three steps to my house.

Clutching at straws as we are, a mate of mine sent me a newspaper article headed 'Bowel cancer survival time is almost doubled'. Something to show the Oncologist. It's a combination of encorafenib and cetuximab and it's for people with aggressive tumours with a specific gene mutation called BRAF (whatever that is). Worth a mention I suppose....

I guess that like you I think about my cancer and all it implies about twenty five hours each day - and I can hardly understand why I feel quite matter of fact and calm about everything. I sleep well and I'm just about maintaining a good weight. 

The twenty year old son of a good mate of mine here took his own life on New Years Day. I bet my mate would rather have my cancer than lose his son. I'd rather have cancer than lose my son. So there's worse than what we've got. 

On that cheerful note, I wish you bon courage - where there's life, there's hope. Second smiley face. 

Gaul x

Hi Lou, 

How's things?

I saw my Oncologist last Wednesday to discuss the results of my latest CT scan. Bad news is that it's gone to my liver - slightly better news is that I do have the BRAF gene mutation which responds well to this new drug combination. Chemo starts 2 weeks today.. I struggle now to maintain weight - gawd knows how I'll manage with chemo. 

In myself I'm OK - I have plenty to be thankful for. 

Cheers.