Needing an ear or even two.....!!!

1 minute read time.

28 May 2011

I am waiting for my Macmillan nurse. I have been referred but as yet have heard nothing. Is two weeks a long time to wait?

I find it so hard to understand where I am at and which questions I should be asking who. Is my endoscopy great news or actually a disappointment. I actually have no idea of knowing. I have no fasmily member or friend to go to appointments with me and am often too tired to do the research myself.

My tumour seems to have shrunk but it has not gone. So far I have not been able to discuss this with anyone other than peopple on this site. It could actually be a terrible result.

I felt good when I first read the endoscopy report but then a colleagues doctor daughter said of the current size of my two centimeter was "bloody enormous" which terrified me.

Then it became apparent that my idiot colleague had told her it was origionally 6 millimeters instead of centimeters. The fool!! Does she not realize these slips of the tongue can tip me over the edge.

The doctor had to use a pediatric endoscope as they could not get the adult one past the stricture in my oesophagus so that explains the continual swallowing problems. They intend to stretch my eosophagus at the end of june so maybe then I will be able to eat more normally. I believe I will be happier then as the continuing limitations in my diet are really getting me down now after 9 months of fortisip and scandishakes.

I am so grateful to the people on this site and really do not think I would have got this far without them. It is strange but I honestly feel that I owe my life to a tremendous group of people that I have never actually met. This online community has been a real port in a storm for me.

FormerMember over 14 years ago

Hi Harvey,

You will feel alot better after your stretch,you will be able to swallow not quite normally but better than you have been doing. I get mine stretched every 3/4 months or so,and it does make a difference.

I wish you all the best and Good Luck.

Take care and be safe Sarsfield.
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
FormerMember over 14 years ago

Hi my husband Tom was given a macmillan nurse the day he was diagnosed with OC she was with the consultant when he told Tom about the cancer,she was always there when we needed her I don't know if it depends where you live but as far as I am concerned everybody should be able to have the help of a macmillan nurse fron the onset.I hope you are contacted soon but if I was you I would get back on to them.

Take care of youself

love marianne.x
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
crystalclear over 14 years ago

Hi Harveysmiles

It is very good news that the tumour has shrunk from 6cm down to 2cm as this means that the treatment is working and that any shrinkage gains control of the cancer. This is what the treatment is designed to do and what is hoped for. As tumours go, it is now quite small at 2cm and perhaps it will continue to shrink. Mine was 7cm and many people have much larger than this, so I think you’re doing well.

I think waiting two weeks for the Mac nurse to call is a little bit too long so you should give her a call yourself as that is what she is there for, and I’m sure she will be able to reassure you and also to answer any other questions you may have. In fact, you should be able to call your Mac nurse at any time as she is there to help support you and offer info and guidance.

Sarsfield is right in that after the dilation or stretch, you should feel better and be able to swallow much more easily, which will be an enormous relief after all this time. It will also allow you to gain more nourishment and weight and give you more confidence, so it should be a good thing overall.

We are all thinking of you Harveysmiles and know how difficult it is for you having no family and no one close to talk to. Sue (Susan Louise) has offered her help in a practical way or for emotional support, and as you know, she and her husband have been through many treatments over six years, so maybe you could think about her offer to help and see how you feel. Otherwise, you know we are all here for you.

Take good care.

Crystal xx

(Sorry if this post appears twice, I keep getting error messages when I try to post)
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
FormerMember over 14 years ago

Hi Harvey

So sorry to hear that you are coping with this on your own and I hope the nurse gets in touch with you soon. As crystal says, two weeks is a long time and I think you should give her another ring.

John and I are at the point of contacting our local MacMillan unit to be assigned a nurse. I am hoping that she will give us the support and advice that we both need.

Wishing you all the best and sending lots of *hugs* and xxxxxxxxx Madge
- Cancel
- Up 0 Down
- Reply
- More
- Cancel
FormerMember over 14 years ago

i thinjk it depends where you live it is a year on the 24th of june since my mum was diagnosed with inoperable oesophegal cancer ,because of her medical history(she has had 2 mini strokes)in the past she was only offered palliative care we have seen the macmillan nurse 3 times in the last year .all we get is while she can drink and swallow her tablets .they cant do anything.mum is now developing alzheimers and we dont know who to ask for help .its like banging your head against a brick wallxx
- Cancel
- Up 0 Down
- Reply
- More
- Cancel