Hi there ... and welcome to our little chat room ...

Well bless ya, trying to be superwoman is o.k for awhile, but can't last long ... we have days where everything seems overwhelming and feel a good scream, cry, swear at the cruleness of this cancer, needs venting ... it's not good to feel strong all the time, it's not good to cry all the time, or carry on as normal all the time... it's about doing all three in balance ... 

When l have a rare bad day, l explain to my partner, just how I feel, and that l need a good cry, to get it out, but will come out the other end and need a cuddle ... so he knows now, that doesn't last long, or happen very often .... but when it does I feel a huge relief and feel able to cope again ...

When someone asks how your feeling, don't say your fine... you can say you have good and bad days .. and then you can share those feelings ... when you write them down .. the anger, having a vent ... or even something funny that happens along the way, someone on here will have felt those feelings too ...

Everyone thinks I'm so brave too, and that's fine... but on here I can admit just how I feel and know I'm not alone ... we high 5 each other on good days ... and under stand and hold the hands of others on hard days .. and even share those funny things that happen along the way ...

So however you feel, know your normal to feel it ... that rollercoaster your on may feel scary... but just look around wer all on it with you ... Chrissie

Hi Silverbirch,

A very warm welcome to our forum.

I am so sorry to read that you have a rare form of cancer. So have I, although mine is breast cancer. Only 1% of people get this sort of breast cancer and I found it very frustrating at first trying to research it, as there was so little information about it. Do you know exactly what type of cancer you have?

When I was initially diagnosed my hubby went into a blind panic and overprotected me. He took over all household duties, even though he has serious health issues himself. We would often find ourselves in tears together and felt totally desolated. Fortunately, we have good communication between ourselves and having spoken about our feelings at length, we are now in a better place. I have had 2 bouts of breast cancer. The first was 8 years ago and the second was 7 years ago, so we have had time to come to terms with the devastation of it all.

It must have been very hard to take that phone call with only yourself and your son in the house. I am fortunate in that my surgeon has always delivered test results face -to-face, regardless of whether the results were good or bad. At first I cried copiously, but they say that this is not a bad thing, as it gets rid of a lot of pent up emotions. I think that I am all cried out now and I have changed my mindset. Now I just live for the day. I wake up in the morning delighted that I am still here and, do as much as I can to build memories with my family whilst I am still able.

What a pity that your best mate is far away from you. Could you What's App or Skype her?

I too am a strong person, but I confess that I went to pieces when I was first diagnosed. This could have had something to do with the fact that I have lost both of my parents, many family members and close friends to cancer and I was familiar with the devastation that cancer caused 20 years ago. Fortunately, treatments and aftercare have come on in leaps and bounds since then. At that time most people died with cancer, now many are living with cancer. The treatments that I have received in comparison to that which my mum had have improved tremendously.

It sounds as if you need to sit down with your husband and have a good open heart to heart, telling each other exactly how you both feel and then try to move forward together. Have you told your son yet or do you intend to do so?

Please stay in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thank you everyone for replying. Your thoughts are so valuable, it makes a massive difference hearing from those who have actually been through this and experienced the same.

Chriss you are right, everyoneuml expects me to be superwoman, I suppose this is a compliment. I am driven by logic and facts and data, I feel emotions but outside of my kids and husband show very little. As an example I emailed a dear friend with the news, I included some thoughts about how I valued her friendship and miss seeing her, she turned up two days later, she said the email made her cry and the emotion told her that this was serious. That made me realise how important sharing is and I'm makings conscious efforts to tell people how I feel rather than doing things for them and hoping that they guess that shows how I feel! 

Rowanberry, your comments about people feeling proud of me are very interesting and confusing. It is my husband and mother that say this most often. I love the both dearly and trust them implicitly , i share more with them than anyone else. I think they both just assume treatment will start, I'll get on with it with s smile on my face and then I'll be fixed. Meanwhile they will both take care of everything at home. My mother shows love by cooking and cleaning....sounds familiar, I probably need to have a cry with her and my father.

Jolamine, I do not yet know the type of cancer, I'll find out Tuesday when I see the consultant, even he said he could see I was strong so he felt he could phone through the results! I bet you are thinking that I'm 6.3 and tough looking, I'm noti'm 5.4 petite and like my clothes and makeup.

i too have started living for the day, dirsbtvthe sunny weather help. 

Again thank you all for taking the time to reply, I hope you can all see my reply. I'm off out for the day to a party, everyone knows but it will be the first time I see them all and guess s what , they expect me to be strong and happy. My biggest worry? What if i pass wind noisily in front of them??? Err I hate it, it's a side effect if one of the pain drugs, any tips?  

Ps excuse any errors as I am on my phone abc it is difficult to type 

Hi there .... Lovely to have a catch up ... And you do sound a bit more together ... 

I'd just like to say, I know some people don't like being told they are brave ... But that word really helps me .... And yes I think I'm brave sometimes ...so it's different strokes for different folks ... So don't worry too much, it's just a word , and it's better then hearing your weak ... There are some of the bravest lads and lasses I've ever met on here ...

I still think they should never have told you by phone though ... But now you know your not alone ... And Jolomine is our shining star ...  And I see your sense of humour is still intact ... And if it happens , give every one a cheeky smile and say .. " well who could that be then" . And look at the others confused ..I'm sure if you chuckle they will with you ... 

So keep in touch ... Any time you want a shoulder to lean on, wer here ... Chrissie xx 

Hi Silverbirch,

On the subject of possibly embarassing issues and in particular, farting, I've found throughout my life that it's best to 'draw the sting'.

If you loudly announce, in any company, that you're liable to fart loudly and uncontrollably, the sting is drawn and should it happen, it can be ignored or laughed off by one and all. Embarassment ceases to be an issue, as does trying to control the uncontrollable, which haas the possibility of making you ill or causing you extreme discomfort.

I have to wear 2 colostomy bags and occasionally there'll be leaks, blow-outs and or odour. Odour, for example, is sometimes only noticeable by me but sometimes I don't notice it and others do. Because everybody knows my situation, they can openly say to me, 'I think your bags might need changing' and I can address the issue. Alternatively, there'll be times when I'm able to say, 'Nope, not me, it must be the dog or somebody's farted'.

Whatever the case, because the sting's been drawn, nobody has any issue with anything that for me, might be my normality.

Bravery - is not the abscence of fear but acknowledging the fear/ being afraid, and carrying on despite the fear.

Strong? Forget about being strong - all we need to be is 'sufficient to the moment'. Deal with each moment as it happens, as best we can. Then forget it and deal with the next moment. Pay no attention to the future, each moment will come along soon enough and will never be as we imagine they might be - sufficient to the moment.

Best Regards

Taff