Breast Cancer Now Forum

dippykate · ‎18-04-2009

doylej - I'm so sorry to hear your news. It does completely devastate you and your family when you get news like this. As others have said, you often feel better when you have a treatment plan as then you have something to focus on and feel you can get some of your control back. My twins were 9 when my secondaries were diagnosed and so my youngest would have been 6. That was in Sept 06 and the oncologist was very bleak then but I have shown them they were wrong and until quite recently was quite well and did fairly normal things. Look after yourself this weekend and let us know how you get on monday. We will all be thinking about you. Katex

dippykate · ‎18-04-2009

Celeste - I'm so sorry to hear your latest news which is now 3 days old so have no idea whether you got there or not. You would have done your best through their lifetime and now you are facing your own battles and it is unfair of anybody (especially family) to expect you to get involved in these matters now. I wish you peace and that you did get to your dad on time. Thinking of you at this time. Katex

dippykate · ‎18-04-2009

Congratulations on your forthcoming wedding. I expect your guests are also wondering what to do - presuming they know you have secondary cancer. We renewed our wedding vows 18 months ago and wrote a note in the invite saying we didn't want presents but donations to a certain charity were welcomed and guests were happy with that. I know asking for charity is different than asking for yourself but I'm sure you could write a note saying that as it is a special wedding and that it would really make it your day, if people could contribute to your honeymoon instead of presents and I'm sure they would understand. I can't advise about money or voucher is best though. Hope the plans are going OK and that you will have a lovely time. Love Kate

dippykate · ‎09-04-2009

Poor Debs - hope the infection gets better soon. i hate it when health prof don't believe you when you say you are ill or feel you have an infection. We know our bodies best and what is normal for us. I'm in a different place to the rest of you regarding tiredness so think I won't be contributing to that part. It was useful to be reminded that chemo takes a long time to get over so thanks for that. As for me, I've got a wee infection - why do they make antibiotics so big!! Otherwise not much to report as seem quite stable at present which is a strange feeling in itself!!! Celeste - sorry to hear about the cock up with your herceptin. I hope they can sort it out for you. Do you mean by 'starting again' that you need a booster dose? Kate

dippykate · ‎08-04-2009

Hi Thanks for starting this post - I was wondering where I could post now and you've yet again found a brilliant thread title. I feel very odd now that I've been told I can't have any more chemo. I'm used to making my own decisions and feel I have been pushed into it but at the same time, I remember vineralbine giving me terrible diarrhoea and I just wouldn't cope with it. I've got so far now and if a bad cold, which is what para flu is, nearly kills me then it doesn't seem worth it when chemo will drop my neutrophils etc further. I don't want to die from an infection after pushing so hard for more chemo. Sometimes, I'm hoping to get strong enough to go home and at other times it seems to much effort to do anything and I just want to throw the towel in and give in and die. It is my stomach and bowels which are giving me the worst grief and it's difficult to get sufficient pain control without being asleep all the time. I seem to be sensitive to so many drugs now and yesterday was a waste as I had double vision due to some anti sickness drug and just couldn't do anything. Been better today and been at home which was great. I'm in a wait and see position regarding my belly as my clotting factors are all up the shoot and there is only a small amount of fluid there and the rest is inflammation in my 'mental fils'. It is more risky to try to get fluid out than leave it in. It's odd having no chemo but I think it is the right decision for me right now and just see what happens. Debs - glad your blinking eye has healed. Love to you all Kate

dippykate · ‎05-04-2009

Caroline It was a mixed bag of results for you. So glad you've got the pain side sorted - that upset me to think you had so much pain that was not controlled.I think it's scary wherever your secondaries are but to have to keep waiting for more scans and results is the pits. I hope there is an innocent reason for this shadow. Brave you having more taxotere!!! I got peripheral neuropathy on my first time of having taxotere and so using my fingers are hard and can be painful but then I'm still here. They did reduce my dose though and the results were the same. Good news about the liver - i think - just cling onto the good bits I think. All the best Kate

dippykate · ‎03-04-2009

Hi All, Well after a very rough few weeks, I thought I was making some ground up against this non - relenting cancer but think I am deluding myself. It is not acting in the usual way - but then when does my cancer ever do that?? So could be mistaking my feeling of getting of better in some areas another area plays up. My breathing has improved dramatically - only need 2 - 3 litres of oxygen through nasal specs and today managed a shower with 1 nurse without getting too breathless so that's the good news. Bad news is my 'mental fills' are growing at a huge speed. In the morning, my stomach is soft and feels comfortable. Then even with a cup of tea, the pain starts and so does the bloating and these painful Braxton Hicks/labour pains. I've lost loads of weight/muscle and have a huge belly and end up having to have oromorph for the pain I'm in to try to eat. The doctors want to monitor it over the weekend but sure it is the cancer that is causing me this problem. I also feel sick a lot of the time so feel these are bad signs so still not sure where I am on this rollercoaster ride. Will let you know what is happenning when I know. Thanks for your messages Katex

dippykate · ‎03-04-2009

Thanks Philidel - I know about Winston's Wish and we also have a local similar one so that is good. I think we have been through all the other main cancer sites for information. There is also, I believe, a link and resource pack here at the BCC about living with secondaries and children. Thanks for your help Kate

dippykate · ‎03-04-2009

Poor you - sounds horrible. I think you need to be seen by your oncologist and given a full MOT to see what is happening. To me, this sounds a very medical question and none of us here can give you that sort of advice you need at present. Sorry!! Really hope you find a cause for this problem and don't stop asking questions till you are satisfied All the best Kate

dippykate · ‎03-04-2009

I'm sure everyone thinks I've got Munchausens disease as since sept 06, I've been saying 'the onc says I've only 3 months- 18months' and then I'm still here really shocks them. The trouble is until recently, I did tend to look very well especially with the wig and make up so it makes it hard for them to understand. I wonder with the news of quickly Jade Goody died or Wendy Richards, that people will realise that cancer can kill very quickly and that you can look quite 'well' up to the end. I don't think people know what to say so just go with what is considered politeness and ask questions like 'you're all better now then?' as they have no understanding of what living with cancer secondaries is like. Often I look back at my education and think what I really needed was lessons in 'life' - dealing with mortgages, government bodies, bank accounts, children, utility companies instead of something I will never have use of again. We've (hubby and me) have really struggled to get advice and help about dealing with children whose parents have cancer, living with secondaries and death of a parent. We have used or looked at the most common resources and you will find a lot of my posts are often about my family. I think over the last 4 years there has been some more honest accounts especially when a parent has died and I feel my family will be able to get help and advice when this happens. It is the 'living with secondaries' bit that is often sadly missed out. Our culture does not really allow us to talk about death and dying so it is hard to find other people in the same stages as yourself and it does not allow the 'patient' to express their feelings adequately either as often I feel I end up considering more what they want and their needs rather than what I wanted out of that conversation - need to be more selfish I think!!! I don't think people really mean to hurt us but they have not been given the opportunity previously with a dying/seriously friend/relative to learn how to communicate from that view point. Having just been so ill again and being told I wouldn't survive, the number of friends who have sat and cried with me and stroked my head or held my hand has been astonishing but seems sad that we have to get within death's reach for friends to express their feelings about us. I hope with the internet and the use of chat forums and people's blogs that it does educate people of our needs. Have really rambled so will update on a separate thread. I hope you feel better for your rant - it does help and that is what I like about the forums that we can vent our feelings and people will respond and although you may get different responses to what you would expect, you generally get really good advice and support. I would not be here now if it were not for these forums I'm sure. Sorry - rambled and waffled for 2 long

dippykate · ‎28-03-2009

I worry about how our honesty about my forthcoming death will be on our children but I am sure it is the right thing to do. We are able to have conversations about it which can be funny and poignant but at least we are all communicating. My children, who were 7 and 4, when their nearly 4 yr old cousin died from liver cancer, 7 months before my primary diagnosis, coped better as they knew the truth about their cousin than the other cousins who were 'protected' from the truth. I think knowing the truth within their age understanding is correct. Sourcing help for our children is so patchy. I don't live that far from Jools but my children can access much more help emotionally than she can and that is so unfair as all children are just as needy in this situation. What an unfair world. Jenny - what have you been up to??? Tell all!!

dippykate · ‎27-03-2009

Jane - I think we all knew you would make this decision at some point and what is the point of you having a miserable time on chemo when you could be out and about enjoying yourself with partner and friendships. For me, the quality of my life has become more important to me as the actual time of my life has become shorter. Go off and have a lovely time going to the places you want to see and with the people you want to be with. Really hope we can meet up and will write to you soon. Love as ever to you Katex

dippykate · ‎27-03-2009

Amber was one of the first people here on BCC who answered my questions when I was so worried about my pathology reports after my surgery. That seems so long ago and yet it was only October 2005. So much has changed in that time. She was so knowledgeable and shared that information with everyone.She was really supportive as well. I remember her describing various holidays or else going off to find out some new treatments and then telling us about it. She was not going to let this disease rob her of time to enjoy herself. She loved her family dearly and they will miss her. I'm sure you have some beautiful photos of her. Amber,you have such a lovely family and I hope you can feel at peace now after all you've been through and know what a splendid life you gave Scarlett and everyone else who has known you. To Amber's Family - I am so sorry to hear this news and send my sincere condolences to you all. Another young life wasted to this disease. Katexx

dippykate · ‎07-03-2009

Hi well I'm back home for the weekend to see how it goes and then repeat of the echo on monday. Echo could give no firm time of when they were going to do it so between the oncs and myself decided if I have 'weekend leave' then my bed is there for me on monday so I can at least rest comfortably whilst I'm waiting. The fluid round my heart is now about 2 - 3cms deep and is difficult for them to drain as it has thickened and there are strands and clots in the fluid so would clog the needle if they tried to get it out.They say my heart is coping but with a heart rate of 100 - 130 beats per minute and my blood pressure is on the low side, I ccan't see how they can say that. I've also developed small pleural effusions which are too small to drain at present but all adding to my need for continuous oxygen. The general lymphangiis has worsened meaning that the alveoli where the oxygen exchange takes place are now rather water clogged. I've also got a new tumour at the top of my left lung and the big one surrounding my oesophogus has regrown. There are also new ones in my soft tissue mid sternum and near my stomach plus my own version of Debbsincornwall's 'mental fils'. I've got multiple deposits in the perritoneal layer between the bowels - the thin tissue area where the blood vessels are and nodes are. The original one in my liver has grown a bit but is nt as big when first discovered in 2006 and is only 2.4cm across but a new one has grown of about 2cm in another liver section but the one that worries me is that the bunch of nodes that grew that blocked my common bile duct are now bigger than first discovered. They hope that all will settle down with the chemo and that the fluid will go away as well so roll on thursday so i can start vineralbine and hopeffully not be oxygen dependent any more. Will let you know on monday what happens on monday. i am so tired i just drop off to sleep the moment i sit down so hope that improves. Kate

dippykate · ‎07-03-2009

glad you all have done so well on taxol. I know my initial 16 or so my signs and problems caused by secondaries all improved dramically. From being unable to eat any solid food to eating Fajitas was really a miracle for me. However, since Christmas the taxol was definately not working so well. I had my 21st and final taxol on 26th feb as it was really having no effect on my swallowing and my skin mets had grown back. The Ct on 2nd march confirmed that taxol had had a mixed response on my tumours with some staying the same or smaller and others bigger and some new ones.Think I'll have to start my own vineralbine thread now!!! Will add my ct result and hospital admission on another part of the forum. Keep going with the taxol and long may it work for you all. Katex

dippykate · ‎01-03-2009

We lost our internet connection from just after midnight on thursday till sunday morning and I've rowed with my hubby so much in that time. He feels all I do is spend time on the internet and don't spend time with the children or him. To a certain extent that is true but then I'm not sure how much time 'well' mums spend with their children or their partner either. I don't want it to feel a 'forced' exercise - sort of 'you must play monopoly with mum now as you won't be able to in the futute' scenario. They want to play on their playstation or play imaginary games with each other and if I ask if they want to do something with me, they don't. I've tried to ask generally today what they thought about spending time with me and all that came up was playing board games sometimes but otherwise were happy with how we spent our time. I do spend time with them but it is often just 'normal' things like going to Tescos with a different one each week or general shoe and clothing shopping. Each evening,I either read or play nintendo games with them or just chat with them spearately or together depending on different things. They spend a lot of time 'looking after me' by making me cups of tea and fetching and carrying things for me. I help them with their homework and know what is happening at scouts and school far much more than my hubby does. I take them to places but I can't always sit and watch as the seats are too uncomfortable and my ankles swell if i can't put them up. Today, we've made bread together but I can't watch them swim as the seats are too awful for me to sit in comfortably. The children' behaviour is awful at the moment but they know I'm not as well as I was and my swallowing is really getting bad quickly which scares them. The twins are very hormonal which doesn't help and my youngest son is very like my hubby and is angry about everything. in the evenings, my back hurts and I'm only comfortable in bed but hubby could join me as there's a telly there and wifi access. We've got money probs at the mo but it's been down to me to sort it out and that is worrying the children and upsetting me that hubby won't get involved or says he doesn't understand. I am spending more time on my own at home regardless of who is in the house but I'm also out meeting people and having lots of visitors. Once i'm settled on vineralbine then hubby and i are going to go away for a few days. I just felt so hurt last night when hubby was saying the children need me to spend more time with them and I need to spend time with him when I'm doing my best but just don't have the energy to do too many days out or active stuff. Should I be making extra effort or is hubby just getting upset as it feels as if the reality of our situation has only just hit him and is more of his problem than mine. Think I feel better for writing it down and don't know what sort of replies if any I'm expecting. I just think I am withdrawing because I'm too tired too interact. thanks for reading Kate

dippykate · ‎01-03-2009

An unhealthy living day appeals to me - I'm lucky I have good train connections to many places but I think Edinburgh and Manchester are a bit far for me to go being a hampshire lass now. Hopeyou East Anglian can arrange a meet - it is worth it. Katex

dippykate · ‎01-03-2009

I really enjoyed it and as Debs said our friendship is likely to last a lifetime!! I t was great to put all these pieces of art and flowers to real people. Sorry aroma and lottielemon didn't somehow manage to spend much time with you - so hope that we can next time. To everyone who couldn't make it or maybe a bit shy - we're a really friendly bunch and it would be great to meet new people as well so don't be afarid of coming. Now when is the next date? Thanks to marmite for the lifts to and fro the station - see we even look after each other as well! katex

dippykate · ‎01-03-2009

Taffy So sorry to hear your news and how devastating to get so close to that 5 yr point and find that. It makes me so angry that these GPs treat women who have previous history of bc for back/joint problems and don't investiagte it for secondary spread. I think when you first hear the word 'secondary' it feels as if you are days from death and it is impossible to think properly and rationally as it is such a shock. What you are feeling is no different to how others have felt and hopefully we can all support you here through the forums. You have a treatment plan which I think helps you to focus on what is going to happen and that helps as then you feel something is being done to help. Give yourself plenty of time and try to treat yourself whilst you are adjusting to the news. Some people want to tell their friends and relatives and others want to keep it to themselves for the time until they feel they can deal with it. I don't know how old you are or if you have children or have contact with children but they often know something is wrong so you need to tell them some sort of truth about it returning but you're having treatment etc. The media is so full of what has happened to Jade Goody and Wendy Richards, that they will have picked up that message cancer can kill quickly so you need to explain what is different about yours - especially when you look at Dawnhc as an example of secondary spread to the bones. The rads I've had often make the pain worse worse for about a week before it gets better and then i found it was 4-6 weeks after treatment that I could feel the benefit rather than thinking 'what have I done to cause this extra pain?' Keep posting and we'll all here for you. Kate

dippykate · ‎01-03-2009

Hi Thought as we'd asked for this section, I'd better use it!!! We had no internet from just after midnight on thurs/fri and as my memory is so poor, can't remember what I said about my chemo visit thurs 26th feb!!! The oncologist is going to see if I can have oral vineralbine on thursday after I get the results of mmy CT scan rather than the IV version as then I can take the 2nd weeks pill home with me and just phone up to make sure my bloods are OK before taking it. Then I would only need to go 3 weekly - that would be such bliss. The decision rests with a financial bod and not anyone to do with oncology at all so they don't even consider the cost of my transport, using the reciner chair all day, providing me with food and drinks and of course the oncologists and chemo nurses time and the pharmacy team!!! Complete waste of NHS resources again as it would work out cheaper then!! Anyway, last time I had IV vineralbine I had terrible diarhoea which happens in about 20% of people nd the other 80% get constipation. How have others got on with oral vineralbine tablets? Does it cause acid reflux problems or bowel problems than the IV one. It would be so blissful to only have to go once in 3 weeks as for the second dose with the tablet I only need to phone to get blood results as they would have given me the second week's tablet to take at home but I'm worried about the worsening of my gut problems. Thanks Kate

Breast Cancer Now Forum

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Dippykate's rollercoastering again

Re: Are you all better now?

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Re: Are you all better now?

Re: Children and death

Re: I'm stopping active treatment

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am I opting out of life?

Re: On the subject of lunch...

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oral vineralbine