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When bowel cancer returns

Hazel

Lung Secondaries

I notice that there is further information for treatment of secondaries in the liver but none for that in the lungs, is it likely that you will have further treatment information in the future, or is it that there just isn't as much available at present than that for the liver?

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I am on Avastin, yet thought K-Ras showed wild! Pretty much 100% sure of that without getting out of bed tocheck. Confused!!! :-\

Hazel

MMMM i could be wrong Chris i maybe wild! i now realise i can't remember for sure anymore!

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Know how you feel Hazel, cancer head Is very real

alisonhelen

My tumours are mutant, should have had Avastin, but can't as I have a benign brain 'mass/tumour'. So if you have mutant tumours you get offered Avastin, if you have 'wild' tumours you get offered Cetuximab, about 67% of bowel cancer patients have 'wild' type tumours.

Hope this helps,

Alison

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hmmmm.....No wink

my K-RAS is def wild, I checked the report this morning, and I was offered either Avastin or Cetuximab for this line of chemotherapy, alonside 5-FU & Oxalipltin. I opted for Avastin

It seems we're all right, so everybody is happy grin or not, as we'd rather not be taking these horrible things anyway

alisonhelen

Perhaps you can take Avastin for both..... I will have to check. Cetuximab can ONLY be used by patients with 'wild' type tumours though!

I can't have either! Bloody typical!..... But I have had another brain MRI last week and my oncologist is sending it to a reurosurgeon for him to decide if the veins/blood supply to the tumour are stable enough (remote chance) for me to have Avastin when needs must. (Avastin causes spontaneous bleeding and I would be at too high a risk of having a bleed on the brain if I was to have it ATM!)

Strangely though, I've recently been put on Fragmin and I take Aspirin, all blood thining agents....... so I just hope it doesn't go 'pop' at any time through those!

I just try not to think about all the 'what if's' think I'd be in Broadmoor if I did! .......some may say it would be the best place!!!

Alison smile

Community user

Hi, it’s a year since I disappeared from the forum and so I thought I would return to the same place where I left off and this thread seems to be quiet now so perhaps you can forgive a long entry! I have swithered about whether to come back at all but now I think that if my experience can help others who might be going through something similar, then I should post it, but I hope and pray that no one on here will ever be as bad as I was. I suppose there is still a part of me that feels ashamed about what happened but that is entirely the wrong way to feel.
I am talking about major depression and mental breakdown.
When I left off last year I was awaiting liver surgery followed by lung surgery for two small secondaries, one in each place. Reading my entries, I see that I said I was alright although I couldn’t sleep without pills. In reality, I was far from alright. I was devastated and shocked by the unexpected recurrence when so many medical people had said that they expected me to be fine- and I was extremely anxious. I was pacing the floor at night to get relief, unable to settle, and became totally obsessed with what had happened to me and what lay ahead. My appetite went completely and I had to force myself to eat, but managed that quite well although was destined to be off food for many months.
By the time I got to Inverness for the liver op, I was very depressed. The operation went fine; it was a tiny lesion in a highly accessible place and was carried out by keyhole surgery. Just another slightly longer incision through my belly button and no stitches but there was no escaping the 24 hours in HDU this time! (The Macmillan nurse said later, rather disparagingly, I thought ‘You’ve only lost a tiny piece of your liver after all’)! I was up and about as soon as I was told that it was allowed, pacing the floors again and it was obvious to all the state I was in. At one point I was in floods of tears about being back on the same ward with the same staff as for the bowel op. I had thought that I would never see the inside of that ward again and that the liver surgeons would use a different ward, but no. It should have been reassuring to be back as the staff in there are absolutely lovely, can’t do enough for you and so caring- but it wasn’t. The very dear staff nurse persuaded me to see the chief psychiatric nurse while I was under their care and I did. He too was very nice, said I was severely depressed and started me on an anti-depressant. He told me that many cancer patients experience depression and that I was not a failure in any way because this had happened to me. He also said ‘it’s not abnormal to fear cancer, nearly all of us do’.
Anyway, I was quickly discharged and 3 weeks later found me heading off for the lung operation. It could have been in 2 weeks but my wound was leaking a bit, though not infected, so the surgeon, (who ‘phoned me up), said he’d do it the following week to give me a bit more recovery time. Due to the distance between where I live and the thoracic surgical unit in Aberdeen, I never got to meet my surgeon prior to admission. For quite a while, I had thought that I was having the op in Inverness as with the other surgeries because no one had said anything different and I had been seeing the chest physician there all this time. But they only have a medical chest unit at Raigmore and you have to go to either Aberdeen or Glasgow for thoracic surgery and one was as far away for me as the other. It was just a mistake but it was another blow to find out that I couldn’t have the op at Inverness where everything is much more personal and you don’t just feel like a cog in a giant machine.
Aberdeen is a huge complex of buildings and a state of the art teaching hospital but it is also impersonal and scary. The night before my lung surgery, the anaesthetist came to see me at about 10pm (he said, ‘my, you’ve been having a lot of anaesthetic recently!) followed by the surgeon at 11.00pm. The surgeon quickly listed all the places where I could expect to find ‘lines’ when I woke up; 2 lung drains, a line in my neck, another in my arm, a line in the wound delivering anaesthetic from some kind of pump and of course, the catheter. Also, he told me where the wound would be- running round from my back beneath my arm and on towards my front. Did I have any questions?
‘Would it be keyhole?’ I nervously asked.
‘It will start as keyhole but I will need to feel the tumour, you see’.
He was a huge, tall guy with very large hands and I am only a small person! I remembered what Suze’s chest surgeon had said and thought ‘oh dear’. I had asked for a sleeping pill but it didn’t work and a pre-med but that didn’t work either- too high a level of anxiety for anything to touch me by this time. At least I was first on the list in the morning but for the first time, I felt frightened of all these gowned and masked people bending over me. The last thing I recall was telling them they would find it hard to get a vein in me and sure enough! I later found my arm and wrist was like a pin cushion. I woke up in the HDU with all the aforementioned attachments plus was hooked up to a blood pressure monitor which was somehow triggered from the nurses’ central station every 15 minutes. The anaesthetist came to see me just as I was throwing up- I was never sick with anaesthetic before- and he was kind and put a sympathetic hand on my shoulder all the while. (I can vouch for the fact that bile really is dark green- well, I have never seen it before and it really is quite startling)! The surgeon then did his one and only ward round with medical students in tow. I did not see him again afterwards; it was always the senior registrar. The only thing I can remember is him telling the students that I was less than half the weight of the guy in the bed next to me! It seemed to be important but I don’t know why.
Eventually, when I was disconnected from everything other than the anaesthetic pump, I was moved to a side room at my own request. My bowel function had been all over the place for long enough and with horrible smells and I couldn’t bear the thought of being on a ward and using a communal toilet with that. I had felt so awful when a nurse had followed me into the loo one day with the air freshener! I had never felt any pain, either from the 7 inch wound or from anything else. At Inverness, I had always been asked about whether I wanted pain relief but in Aberdeen, it just seemed to be given automatically, 4 times a day as a variety of tablets including morphine, despite my repeatedly saying I wasn’t in any pain. They said I needed to take them and I did as I was told. But the result was I was so doped, I could hardly keep my eyes open and in my depressed state, I thought I was ‘losing myself’ and I was frightened that I wouldn’t be able to hold myself together in there. Anyway, I was soon allowed home with a massive amount of pain relief tablets and instructions on how long to use them etc plus some horrid antibiotic that they had started me on because they had swabbed my abdominal wound, which was still discharging a little and discovered ‘scant Staphylococcus aureus’. The antibiotic made me feel ill and turned what I passed a disgusting shade of dark green! My GP told me to stop them after I got home. I stopped the pain tablets as well because there was no pain and in fact, the whole area from back to front was and has remained, totally numb as all the nerves must have been severed. The only thing I felt was the scar tissue as healing took place and that was a feeling of constriction, not pain. I felt it a lot at first but not so aware of it now.
My GP had been hoping that my anxiety levels would decline following the ops but that didn’t happen and I just continued to feel very depressed and could not get out of the black hole I was in. I am a Christian but I felt completely cut off from God and when I tried to pray, it felt as though it was a complete blank and nothing there. However, physical recovery was straight forward and I duly had both my post-op checks at Inverness. The liver surgeon told me he would refer me to the oncologist and so I went to him as well and he checked my wounds again and then discussed the chemo. I had been made aware of the unequal treatment for bowel cancer patients in Scotland regarding no MABs. I had already questioned the Macmillan nurse (who I have known for years as she’s part of the horsey set up here- but very different seeing someone in a professional capacity) and she said that cancer patients in the far north were not disadvantaged and further, that folk in the far north were sometimes referred to English hospitals for treatment not available in Scotland. So I asked the oncologist in Inverness about it and he said that they would obtain any treatment for me that would be of benefit. However, this does not seem to include avastin as he said: ‘You wouldn’t want to have that; it’s very nasty stuff’. Hmm, well since it is the drug that kept Al Basset Al Magrahi going for 3 years with his prostate cancer, rather than the 3 months predicted by the Scottish Justice Secretary, then perhaps I would like to try it, thank you very much! Ironic that Magrahi, once back in Gadaffi’s Libya, could obtain treatment that he and so many others are denied in the Scotland of the SNP! At least there is now a lot of discussion about it in Holyrood so maybe things will change for the better, who knows.
It was agreed that I should start the chemo in a couple of weeks and that I would have a PICC line, as my veins are inclined to disappear. I continued to go through the motions of life, trying to follow my routine but so anxious and depressed that none of the usual things that give me joy could touch me at all. It was truly awful. Then, one day while I was out walking, I was struck with the thought, like a physical blow, that nothing I had ever done had been worthwhile and that my life had been a complete waste and that I was a waste of space, like a piece of dirt on the ground compared to other people, including those whose stories I had been following on this website.
Like I said, I believe that I have a Saviour (although at that time I felt as though Christ had deserted me), but I’ve never known what to make of the devil. But all I can say was that this felt more like a satanic attack than anything else I have ever experienced in my life. It was dreadful and I couldn’t shake it off- I was way beyond rationality or reason which should otherwise have been able to prevail, (since I have spent most of my life trying to help others and there was no basis for my thinking). I went on endlessly about my worthlessness to my family, to my husband and even to my children as well as to close friends. The only relief I could get from this horrible, destructive obsession was sleep- and I couldn’ t sleep without pills.
One day it all became too much for me. I took an overdose of zoplicone, not enough to kill myself (evidently!) but enough to knock me out to an extent that my husband couldn’t wake me when he found me after work. The emergency doctor did manage to wake me and I was sent to the local hospital for observation in the HDU for 24 hours and was conscious by the time I got there, though very sleepy.
The next day I was still out of my head and threatening to take more pills though, of course, I now didn’t have access to any. The doctor who came round said that he wasn’t able to discharge me home and asked if I would consent to go to the psychiatric hospital in Inverness and that he had arranged for me to go on an emergency voluntary basis. It was late at night by the time we arrived there after a pretty nightmarish journey for us both because I was still raving. We went to an interview room and for the first time in ages, I began to feel a little hope. They promised that they could help me and so it proved, though it took a good while.
It is a fantastic place, nothing like I had imagined. A new-build hospital with every facility and activity you could hope for and all individual, en-suite rooms and a great deal of support at all times. Everyone has their own designated psychiatric nurse (and mine was so lovely, her name is Shirley) who works out an individual programme with you and there was a huge amount of mutual support given by the patients to one another. I met some very ill people in there but they were good people too. Of course, there were drugs and I was fairly doped up to begin with to try and stop the agitation- and started on a different anti-depressant medication. But it was all fully discussed and explained. Gradually I started to turn a corner. I began to believe what they told me- that my thoughts about myself were delusional and that the breakdown that had happened was due to mental illness and not my fault. Of course it had been triggered by the cancer but not in a straightforward way. They said there had been nothing I could have done to prevent it and that it was partly genetic disposition and partly due to my feelings of lack of self worth and lack of self confidence that that had been with me all my life.
I began to engage in the hospital activities (which was so hard as all I wanted to do was hide away in my room), to go out for walks, to go to the church service on a Sunday and have visits from the chaplain and I started to pray to be cured of mental illness! I went home on pass several times and found that the kindness and support of my neighbours was overwhelming. In the hospital I had been advised to stop looking at Beating Bowel Cancer as comparing myself so unfavourably with others had fed my illness. But I thought and prayed for everyone on the BBC every day and I still do.
Throughout it all, my absolutely brilliant husband and family stood by me and I cry now whenever I think of what I put them through.
I began the fight back again against the cancer by starting the chemo, with first session in Inverness but I was home before having the other sessions and had them in the local hospital. (I noted your Bowel Cancer Group notice in the Macmillan suite, Chools. You’ll know all the places and people I’ve been talking about, no doubt). The chemo hit me really hard; I just couldn’t do anything and was inactive for 6 months, hardly leaving the house and didn’t even see my horse- and she means such a lot to me. Christmas 2012 was awful- I tried but I could not enjoy it, I just felt ill. It did nothing for the depression, needless to say! My husband did everything in the house in addition to his work, while I struggled with all the side effects but my lovely kids kept coming to stay as often as they could to try to cheer me up. I Had all the side effects that were listed (and some that were not), other than mouth ulcers. I lost count of the number of times I was sick, something that I had hardly ever had in my life before. Diarrhoea was particularly bad, usually for the two weeks following completion of the course of capcetebine tablets. They kept having to give me an extra week for it to settle down although my blood held up brilliantly and the picc line never gave any trouble. I never made it down to see my oncologist in Inverness during the whole course of chemo because the diarrhoea was so bad. The few public toilets that do exist in the scattered villages between here and Inverness are all closed through the winter in keeping with Highland Council’s belief that people in their region stop going in October and start again at Easter! What are you supposed to do?
Anyway, I plodded on and the goal I had was to make it to my son’s wedding on the 25th of May. My daughter came home towards the end of chemo and we had a lovely time on the internet choosing outfits! I never buy nice clothes normally (you don’t need them for crofting!) and so I was well out of practice! I certainly made up for the months of not spending any money at all! Chemo came to an end and after 3 days, I started going out, walking and then attending to my very neglected garden. I began visiting folk and taking myself off to see our dear old horse who had been looked after by a kind friend for all these months. Soon I was staying out all day, the joy of being outside outweighing all the aches and pains of prolonged inactivity. At first, I was incredible unsteady due to numb feet and was always falling over, collecting bruises! But gradually I began to adapt to the new situation regarding hands and feet and as May went by, I got better and better, mentally and physically, something I had not believed possible a short time before. I was enjoying my life again, wanting to see people, back to being myself, in fact. I had my wedding outfit and it looked lovely; I was all set to rock’n’roll (well, actually it was going to be a ceilidh band but you know what I mean)!
I had booked a hair appointment for May 23rd, first paying a visit to the nags at the croft. It was blowing a hooley with sideways sleet and snow and the horses were all as high as kites. Trying to extract Gypsy from the field, I tripped (again!) in the gateway, went down on my knees and then forward, banging my upper lip against a rock with the sight of hairy legs and bodies circling around me. Luckily they didn’t trample me and I scrambled to my feet, tasting blood! Great! I’m going to have a swollen, split lip for the wedding, I thought, but luckily it never came up or showed at all. So then on to the hairdresser where I looked a sorry sight with my wet muddy knees- luckily, she’s used to seeing me like that. The hairdo looked lovely for the half hour in which it stayed in place but I managed to partially restore it for the wedding.
May 25th was glorious, hot, sunny not a cloud in the sky, a bit of a contrast to 2 days before. Everyone was so, so happy. In the morning, we were ‘chilling’ in the grounds of the Bunchcrew House Hotel where we were all staying as the wedding was not until the afternoon. It is about 2 miles from Inverness on the shores of the Beauly Firth- look it up, it’s fabulous. An osprey flew down right beside the hotel, caught a fish and then flew slowly away. I have seen osprey before but never such a good sighting as that and of course, I didn’t have the binoculars with me. I thought, this is a wedding, I won’t be watching wildlife, how wrong can you be? Things like that give me such a buzz and I love wildlife. It set the tone for the whole weekend. The wedding was held in the RC church by the River Ness in the centre of Inverness and the reception and dance, back at the Bunchcrew. The whole family stayed for 3 nights and then we ran out of excuses to stay longer! It was all perfect and I now have a lovely Irish daughter-in-law who is beautiful outside and in and they are so happy. I danced and danced (though I did need to sit down sometimes and had to hang on to my partner or my numb feet would have had me on the floor)! It was truly one of the best weekends of my life and one that I didn’t even know I would see a few months back.
So I want to finish on a continuing happy note. I am better both in mind and body. I am no longer depressed. I feel as though I have been to the worst place possible and I will never go there again, come what may. The mental health folk said that maybe I needed to go to the bottom in order to come up again and to be able to come to terms with everything. I have got back in the saddle (both bike and horse) and aches and pains have diminished to almost nothing and my garden has never looked so good! I can still heave bucket loads of pebbles and large rocks (I’ve been re-vamping the garden and I absolutely love stones and shells so a lot of them have been moved up the hill now in the back of my ancient micra as it groans it’s way up the steep harbour road)!
My last scan in April 2013 was, after 7 weeks of waiting for the result, a qualified clear. I have a tiny spot of something known as ‘ground glass opacity’ in my left lung which my GP says is not cancer but typical of what can develop after a bad chest infection. I had a really nasty chest infection at the beginning of 2012 that was treated by the GP and it had only just cleared by the time I had my first fateful annual scan in April 2012. Again, the chest infection was something that I had never had in my life before but I now believe was due to the fact that my beleaguered immune system, in trying to cope with 2 tumours, could not deal with that as well. I waited 5 weeks for the results of the 2012 scan so knew I couldn’t read anything into the long wait this time around (although scans while directly under hospital care had produced quick results). I did not mind; in fact, I didn’t want to know before the wedding but then, eventually went to my GP when 7 weeks had gone by and then received a letter the day after. They’d had a lung MTD meeting about the anomaly and that’s what had taken the time and it will be monitored on the 6 month scans. So just enjoying LIFE and the summer and feeling good!
I believe I know now why all this happened to me and it wasn’t a single cause but a combination of circumstances. My own personal make up; Losing a dear friend whom I had been helping and been closely involved with to advanced endometrial cancer in November 2011. She’d been given 3 years and made it to that, pretty much to the day and I was the one that found her on her final morning. I could write reams about her and what she meant to me, the fight she put up etc. Thirdly, what I call the 90 percents. I came in through screening, having had NO SYMPTOMS of bowel cancer whatsoever. I was very fit, correct weight, felt well and all the rest of it. When your bowel test is positive, you get a letter (or I did), basically saying try not to worry. Out of every 10 people with a positive test, 5 will have piles as the cause, 4 will have no identifiable cause and only 1 will have cancer- 90%, you see. So I didn’t worry and then when colonoscopy discovered I did have cancer, it was, from the start, deemed early. I didn’t need pre-operative chemoradiation, had surgery straight away, it was small, hadn’t gone through the bowel wall, hadn’t gone into lymph nodes and no metastases. Keyhole surgery and no ileostomy. They are brilliant and thorough in Inverness; they like to have all the info possible. I had an MRI scan on both my bowel and my liver before my bowel surgery in May2011. The scan of my liver was because the CTscan had shown what they were pretty certain was a benign cyst and so they checked the whole of my liver and there were no secondaries. It was a cyst and it remains there, unchanged. The keyhole surgery added to a sense of it being surreal; 3 tiny marks that had all but disappeared in 4 weeks. I was out of hospital in 3 days and my surgeon told me on discharge, before my pathology results were in, that he was sure I would not need chemo. So there we have it, the 90% again- that much quoted statistic. Spare a thought for the 10%! If anyone ever wants to know how it feels to fall out of one group and into the other, (the difference between the ‘cured’ prognosis and something other), then I’m the (wo)man to ask!
Along came the 2012 scan, in the meantime having lost my friend and been ill myself. The last thing I’m told before having the scan is that ‘we are not expecting to find anything in you’.
I wait 5 weeks and hear nothing. I mistakenly think that ‘no news is good news’; surely they would have let me know otherwise. Then I start getting ‘phone calls. There is something in my lung. Malignancy best explains it but they don’t know at that stage if it is benign, cancer or something else or if cancer, what kind it is so I am referred for a biopsy. I have searched in vain on the BBC forum for anyone else who has had anything similar (?)- this amount of uncertainty. I believe it proves how little they expected a recurrence in me and while waiting for 8 days for the needle biopsy, of course I’m still hoping that it isn’t cancer. But it is and it’s a bowel cancer secondary. So then I’m sent for a PET scan and that reveals ‘something’ in my liver. Again, even though it glows with the PET, the same doubt. ‘We’re not sure whether this is involved or not. We could do a biopsy or monitor it with scanning’ until fortunately, someone decides ‘hand on heart this is a metastasis and we’ll take it out’. All the time, uncertainty, doubt and hope that it isn’t what you fear it is, only to have hopes dashed and more and more unpleasant procedures and bad news lining up against you.
These, I believe and for what it’s worth, are some of the reasons why I cracked up. But I’m ok now, (prayers have been answered), and I intend to remain so. I feel strong now and very happy each and every day and no longer afraid or anxious and so, I hope, do you.

suze

How very brave of you to post all of this. It is a strong story and you tell it well.

It is vital to record the full range of things that can happen to us on this journey. Mental health is not always within our own control, and the wretched emphasis on positive thinking can make it even harder to admit to the dark times ...

I know what it is like to be so certain of your own uselessness that killing yourself seems like the best thing to do for yourself and for your family and friends ... People would not guess it from the way I post in here, but I have had mental illness myself and in my late 20's I took enough drugs to kill myself. It was a miracle that I survived it ... and so now all this life, however it plays out, feels like a gift I had already declined ...

I guess I mention it to show that any of us can have this experience and also can recover from it ...


and re the 90% who will be ok after a negative screening result, it made me think of the other 90% too - the ones who can survive cancer number. You often see it quoted as a survival rate, but that is only a percentage of the people whose cancer is discovered "early" enough ..... sadly that is not many of us at all .. the vast majority of us are on the other side of the "early enough" divide, and face the sort of on going battle with treatments and bad prognosis that you have shared with us here ....

bless you my dear, I hope your faith keeps you bouyed up for whatever you face in the future
xxxxx

Hazel

As suze says how brave of you to post. It is an inspiring story, although I was in tears reading through your experiences are very inspirational, to have gone through so much, physically and emotionally. I am finding it difficult to respond suze has as always said things so perfectly
That I shall just agree with her. I was also upset to hear that you had been at that dark place yourself Suze, my experience is again from the other side as my mother took an overdose once too......both of you have my love and admiration if that doesn't sound too patronising.....it is meant very sincerely x x x

Janepoiuyt

Like Hazel I am in awe of both of you for your honesty and strength. I have felt like that once in my whole life and very briefly,,but it gave me a very small understanding of why people try and commit suicide.

It is so sad that people are made to feel that depression/mental illness is something to be ashamed. In so many ways it is harder to deal with than a physical illness.

I admire you both so much for having the courage to share your experience with us.

Thank you

Jane x

Brian

I won't add much more, except to offer my thanks for the frank and open way in which your stories have been re-told. I think you all know that I became severely depressed following my surgery and chemo and needed psychological counselling and medication, the latter of which I'm due to start weaning off this week. Love and blessing, B x

suze

I can tell you even now it is not an easy story for me to share, but I hope that gypsy finds some comfort in learning this secret about me .. in all honestly I find it much easier to be "out" about being gay than being a suicide-survivor ..

but that was all a long time ago for me, that woman then seems a stranger to me now, but it is part of the reason I am so down on some of the happy-clappy stuff that surrounds cancer sometimes, as though we were not allowed to feel bad about this awful diagnosis, .. so that we even feel we cannot admit our dark days .. never mind if it gets to full blown break-down as it has done for gypsy ..

even though I am very good at positive thinking these days, I know only too well that we can all have great variations in our mental health ... and I too was weeping as I read this account ..

bless you, gypsy

xxxxx

chools

Hi Gypsy

Great to hear from you again and thanks for posting the detailed update; I often wondered as to what had happened to you and your horse that you cycled to see. There's a monthly meeting at the Maggie's centre in Inverness for bowel cancer folk, but appreciate that might be some distance for you to travel. Please PM me should you require details

Chools

Community user

Thanks so much for all your replies and yes, I think it's good to be honest about everything that can happen to us. I honestly thought I would never suffer from mental illness and would have said I was and am a happy person with so much to be thankful for. Have had so many blessings in my life and so much to be grateful for- and I am grateful! I did not think that about cancer, just somehow thought it would be breast rather than bowel if it happened to me at all. Oh well!
I have my own happiness video now available on U tube and all I need to do is look at it and it makes me smile so much! If you want to see it, Google The weddding of Liam and Dearbhail Whittles.
Liam's in a local group called The Maginot Band- they're on Facebook and the internet etc. Happy news today which has been brewing for a while is that they might be about to hit the big time as the outfit that manage a very famous group are interested and like their stuff! They are looking at a management contract! Hey, I might yet be the Mum of a superstar! Actually, I already am- 2 of them in fact!
grin
Pre-wedding conversation between myself and two friends (subtitled 'senior moments'). Honestly my last word on the wedding but you have to laugh, don't you?
1st Friend: 'So you've got you're oufit all sorted out then? Did you get a hat'?
Me: 'Yes, all sorted but honestly, can you see me in a hat? Besides, if it's as cold as this, I'll be wearing my woolly bunnet, it can be perishing on that water front in Inverness'!
1st Friend, horrified: 'You can't do that'!
Me: 'Yes I can, you just watch me'!
2nd Friend: 'How about a 'what'd'ya call it'?
Me 'I dunno, what's that'?
1st friend, with flash of inspiration: 'You know, those things they wear at Ascot. A fantasiser'!
2nd friend: 'I'm not sure that's the right name for it, I think it's something else'!
1st Friend: 'A fornicator'?
Me: 'Well, I might be out of touch but that's definitely something else! Anyway, I've an excuse for getting mixed up; I'm ill, I've had chemotherapy'!
1st friend: 'I've got it! A fascinator and by the way, with a comment like that, there's no way yor're ill'!
Me: 'Ok, but I've not got one of those either!

Jools

I have very recently been diagnosed with terminal rectal cancer lung mets. Having been diagnosed in Feb 2012 with stage T3 N1. Had surgery, which resulted in a permanent colostomy. Further 6 months of chemo, which ended March this year.

I felt as though I was over this cancer and getting back on my feet. I began to feel healthier and tried to put everything behind me. Only after having a ct scan on July 1st, my results showed several lesions over both lobes and in my lymph nodes. My prognosis is that I'm incurable and the treatment offered is palliative.

Are they others on here been in my position? I do feel quite alone. As when you tell friends etc they feel very uncomfortable about me talking about it! I'm actually o.k with it! My family are incredibly supportive, I'm very lucky. I find it really hard to believe because I look and feel too well!

Jools

Brian

Good morning Jools. This is hard news to come to terms with. Others who have experience of this will be along to share their stories. I just wanted to respond to your post as it's the weekend and it may be some time before you get a fuller answer to your question. Don't forget the nurse helpline, too. Ring them on Monday and have a good old chinwag about it all. I know what you mean about feeling alone. I remember being in rooms full of people and feeling that I was the only one there! We are here for you. Hugs, B x

rutha

Jools,

So sorry to hear about your situation.

I have stage 4 colon cancer and on palliative care as I have lymph nodes, peritoneum & ovary mets.
It's hard to get my head round it most days as I feel fine, with the exceptions of the tiredness and the occasional dickie tummy from the chemo, and until I lost my hair, people who don't know me wouldn't know I have cancer.

You aren't alone on this forum, there are many strong, kind and loving people here you can share a rant or a laugh with.

R xxxx

Jools

Thank you both for coming back to me.

I find it hard to comprehend that I'm actually this ill. Especially when I look so well. Other people's reactions can be a bit of a surprise. Especially when they avoid talking to you. That I find hard to deal with.

It's good to hear there are others out there, not just surviving but living their lives to the fullest. That helps me tremendously. I am learning new coping strategies. Also writing a diary, which I have never done before! I am no writer!

I will keep you all posted. I am hoping my Kras results will be available on Tuesday. That'll give me a better idea on prognosis and treatment.

Much love to you all.

Jools x

Community user

Dear Jools,
I replied earlier but it's gone into the ether, or wherever it goes when you hit what you think is the correct button and it appears that you have done the right thing but you haven't! I am not exactly in the same position as you since my secondary tumours were surgically removed and my current status is 'nothing showing' but we all know that with this bowel cancer malarky, it's likely if not certain to come back at some point. Anyway, what I have learned from this forum is that palliative and incurable are very far from meaning 'the end' and many folk are continuing to lead their lives regardless. I think it's brilliant that you feel so well because that means that at this point, you're the same as anyone else among your friends. None of them know what lies around their personal 'corner' either- they just don't know about it, that's all. We are all 'terminal' from the moment we're born, just at different stages along life's path. I am trying to pluck up the courage to say this to anyone who next speaks in that way to me. Folk don't like hearing it because most prefer not to be reminded about their own mortality and haven't had to consider it the way a person with a life-shortening illness does. Yes, I hate these episodes of awkwardness as well. I feel they are one of the many nasty ways that cancer has of making us feel cut off and isolated from 'normal' people and it's not a good feeling. But the reality is we are all actually the same, all normal people whether we have cancer or some other illness or not and so I'm just trying to get on with my life in the same way as before, hoping that folk will just forget to look at me in a different way, if that's what they're doing!
As regards prognosis etc, it's a notoriously difficult one for medics anyway. I hope Suze comes on to post on this but one of the things that sticks with me is Jane Tomlinson, who not only lived for 7 years beyond her medical sell-by date and raised amazing amounts of money with her endurance cycling, but also famously stated that 'death doesn't come with the prognosis'! I hope that's something I'll always remember.
Keep in touch,
Gypsy

suze

Yes, I have been in this situation.

My signature summarises my story.

I got used to the palliative care label, handed down nearly 4 years ago .....and then I was one of the lucky ones whose prognosis improved.

It just gets weirder, still being here after you got quite resigned to the death sentence. :-\

I sincerely hope that happens to you. It will depend on the lung mets, where they are, how they respond to chemo , etc etc. No-one all give you this option because it is not the norm, with lung mets....but it is happening to me.
Despite having them on both sides...

As for family and friends, they will get used to it. We have to. I found some were excellent and would allow me to talk about what I wanted when I wanted to.

I suggest that you test people, and test them more than once, give them chances to be the friends you need. It I'd quite possible that I trained my best mates! LOL