Good Morning

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Good Morning Forum!

So, I've calmed down- slightly! after getting the bombshell news on Tuesday that Jay's cancer has recurred. I've been `googling` like mad to find out what I can about different things I know they say its not good to do this and I think they say `a little knowledge can be dangerous` especially over the internet. He has lost some weight I notice on his arms and legs and his bottom but he still has his `girth` (tummy). I am thinking it is more to do with his type 2 diabetes because now I have had a day or so to process the news I remember his surgeon saying that weight loss can result in his blood sugars being too high in diabetes which they have been and it mentions this on the NHS website -so many websites and lot of them seem to come from America i.e Mayo Clinic, Web MD etc- so I tend to try to stick to the NHS ones Scotland and England because they will tell you what treatments are happening here! I know this is not going to go away anytime soon and he sees the oncologist on the 7th July (ironically that's just over a year since first diagnosed with cancer) and no doubt a management plan will be put in place. I would like some views on something from you all though. When Jay finished his surgery and treatment I asked his oncologist when we met up with him back in February and at the time I asked him if Jay would need any further courses of chemo or radiotherapy and he said no and words similar to `If no further treatment is required in the immediate future, we don't do or start anything`. I now wonder if they did do more chemo or radiotherapy if it may have killed off any micro cells that were there and harder to detect but instead have festered and grown again. This makes me a little bit angry. We have had no qualms about our MDT and their great they've picked up this recurrence pretty quickly but I just wonder with the extra chemo and radiotherapy this could have been avoided. Does anyone have any thoughts on this. Would be interested to know. In the meantime I am beginning to come to terms with this new diagnosis but we will know more once we see the oncologist. I know Jay is not going anywhere anytime soon so as his surgeon told us `just live for now`.

Vicky x

court over 3 years ago

Tricky one PattyK my mum has actually never had post op chemo but always been in a stage 4 setting so different comparison. It’s complex as chemotherapy apparently works better on visible disease than microdisease and I think that’s why surgery is still classed as the gold standard for curative practices . I think it’s to do with the rate of cell division . There are the odd people who go into complete remission in bowel cancer with chemo alone but not too many . However it is still used in mop up settings so still showing some benefit with the research to back that up . This is completely different to cancers like blood cancers .

Lower stages have a risk /benefits analysis applied and again that is backed by research in that the chemo could potentially cause more issues than leaving the person to recover without it . Sadly a very small percentage of this group still have recurrence but it’s a small group .

These sort of decisions are governed by the Scottish Medical group that sets out the practise guidelines for Scotland . The equivalent for NICE and not really at a local level .

Although I do not know how I would feel myself and I often wonder how people cope with these situations . A spread was my mum’s starting point and there was none of these complexities to think about .

I can understand why you would feel that way but have a chat with the team and they would explain the reasoning much better than I can .

Good on you for sticking to the NHS sites . Getting informed without getting scared each time seams to be the fine line we tread .

You do sound in a better place and good to get his other health needs attended to .

Take care ,

Court

Helpline Number 0808 808 0000

PattyK over 3 years ago in reply to court

Thanks again court. Yeah I'm sort of in a better place I think. Nothing else for it I suppose but to tackle it head on. As I said we won't know what's happening until we see the oncologist himself I just want to know if there's something that can be done to buy him more time - and who knows another cure.

PattyK over 3 years ago in reply to PattyK

Just thinking the other day. He's actually lived with this for 3 or 4 years without even knowing about as the original tumour was dormant for 3 or 4 years without showing any symptoms and just surfaced 18 months ago so if they didn't find that we may have been none the wiser. But then it was his toilet issues that sparked it all off. So hopefully they'll be able to do something to keep it 'at bay' at least and once they get his diabetes sorted that will help too plus if Jay can maintain his positive attitude. Starting to let imagination run away again. So stop now for a wee while.

court over 3 years ago in reply to PattyK

A patient told me to keep my mind where my body was . Not letting it run off down ever worst case scenario. As you can imagine it took a lot of practice to put in into practice and a lot of fails but I did use it as a technique to pull myself back , remind myself of all the chemo options she still had at her disposal. Etc .

Chronic conditions are hard work from many angles but good days are in the mix and that helps carry you through .

I used to think about that too . How long had it been there as a spread . My mum is thirteen years since diagnosis but it could easily be 15 years since it set up camp which would put her in /out of active treatment for around nine years not seven !

Thats almost a decade of living with cancer in and around her body . A lot of anyones life .

Best foot forward as my mum likes to say and I hope you are starting to plan approaches and strategies to look after your own health as you go through this with him . A coffee out with friends etc , walk in the park ,

It all matters !
Court

Helpline Number 0808 808 0000