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Gullet (oesophagus) cancer

A group for anyone affected by gullet cancer (also known as oesophageal cancer) to get together, ask questions, share experiences and support each other.

Carers & Caring...

No. of entries: 263 | Posted on 09 Jul 2010 01:36

Carers & Caring...

  • Hi Steve,

    Thank you for the advice, I have tried some of the recipes and the lovely people on Chat also had some good suggestions. Unfortunately my dad takes a couple of bites and then complains about the taste or the texture and sometimes even the appearance with just about everything. However, I’ve not tried all of them yet though, and will keep persevering!

    Hi Sue,

    It sounds like your husband and my dad are very similar, as he also insists he's fine, even though he has no strength and obviously feeling terrible due to chemo, dehydration and lack of energy - which as you say, has a detrimental effect on their mental and emotions capacity (as well as the positive effects of hopefully killing those cancer cells!). It's a worsening cycle and I'm just not sure how to break it.

    The know the answer isn't as simple as those damn shakes, and I don't understand what he's going through, not really...It's just so very hard seeing them insist they're ok and then watch them struggle. And it's frustrating because we're all doing everything we can, and yet he's still struggling, especially when it seems like he's trying to thwart the help - not just food and drink, but refusing to rest, refusing to see well-meaning visitors, tell the doctors only half the story, going out in the sun, even washing himself...I don't understand his reasoning why, and while I was angry yesterday, today it makes me sort of resigned and very sad.

    Even if it caused some grief, I'm glad the rash turned out to be minor. I hope you have a better today, too. Take care of him, and yourself! I take comfort that there are people here that understand even though if I had my wish, none of us would be in this boat

    Thank you. Sending hugs back to you and everyone reading. I hope today is a good day. Antonia xx

  • Hi Sue and Antonia, I have one of those awkward men too! I guess it is their way of fighting the cancer and not letting it dictate how they live their lives rather they want to stay in control. We have to give them space ( Steve told me that ) we have to back off. We can only provide food and love etc but they have to focus on surviving and take what they want when they want it. I know how hard it is as a carer and we want to help but sometimes we get in the way and that is when I think we feel hurt and under valued. We are all doing our best so keep on with your efforts and I send you big hugs as you deserve them, love leisha xx (((((((((((((((((((((((((((((((BHS))))))))))))))))))))))))))))

  • Hi All,

    I'm new to the site, and I’ve spent a few evenings reading posts on this forum. My dad was diagnosed with oesophageal cancer on 23rd April after a gastric endoscopy, which showed a tumour is obstructing his oesophagus. The biopsy confirmed it was cancerous.  He has since had a stretch to help him to eat, a CT Scan which we were told had shown the cancer only to be in the gullet.  2 Weeks after the stretch dad was admitted to hospital with basal pneumonia.  He spent 2 weeks in hospital (8 days in Intensive Care) and had a stent fitted as a second CT scan had shown that the cancer had started to come away from the gullet and had torn it (This was what caused the pneumonia!)  He had a CT PET scan today which we will hopefully get the results quite quickly.  Almost 3 months since we found out and still don't have the staging completed yet!

    Since his diagnosis dad has lost 3 and half stone, every day is a real battle.  He stuggles to eat properly and is sick after almost every meal.  Doctor has prescribed medication to help push the food quicker through his oesphagus and also to help with the sickness.  I'm getting really worried as every day he is looking thinner and weaker.  His balance and strength are really suffering too.

    Has anyone else come across this sickness and sore around the chest feeling after have a stent inserted or can you offer any hints or tips with living with a stent?  All suggestions are welcome:)  I should have mentioned that the stent was fitted on 18th May.

    All the best to those on this journey too

    Lynda xxx

  • Hi Lynda

    Welcome to the group although I’m sorry for the reason you have to be here. 

    You’ve made no mention of any other treatment, so I’m assuming that because the Staging is yet to be completed, then there has been no treatment in all this time.  Three months is a very long time to wait and the government guidelines are quite clear:

    - there should be no more than two months wait between a GP referral and suspected cancer.

    - starting treatment no more than 31 days after the meeting at which you and your doctor agree the treatment plan.

    http://www.cancerhelp.org.uk/about-cancer/cancer-questions/waiting-times-for-tests-and-treatment-after-cancer-diagnosis

    Unless the pneumonia and then the oesophageal tear prevented treatment from starting in the first place, then you need to start asking questions, beginning with the consultant and your GP.  If this is unsatisfactory you should talk to PALS also.  Clearly you need some answers as to why the long delay, especially as the cancer was contained in the gullet.  If you call the Oesophageal Patients Association they will also be able to offer you excellent advice and support.

    http://www.opa.org.uk/

    To answer your question regarding the stent.  I understand from others that they can cause some discomfort and pain, especially if it may have slipped out of place or is causing the tumour to press against nerves.  Diet also plays a factor, so it’s important to eat small amounts of soft food so that it doesn’t stick.

    Do keep in touch and let us know how you’re getting on and I send you and your dad my very best wishes and lots of luck.

    Crystal

     

     

  • Hello Lynda,

    I am sorry both you and your Dad have found yourself in this rotton situation but on this site you will get good advice and friendly words whatever the outcome. The web addresses you have been given are good ones, there are guidlines that should be followed. Your Dad should also now be on a MDT which is a Multi Disciplinary Team where his case will be disccussed and he should also have a clinical nurse specialist. You should be able to contact that nuse for advice.

    Keep chasing the results... being a pest can help.

    I am now a year on from my operation, diagnosed at 41, had complete gullet removal and 1/3 of stomach taken out. For me the OPA www.opa.org.uk has been great and I now act as a support on the phone through them. Neither you or your Dad are alone in this.

    Good luck and take care

    Issy x

  • Hi Izzy and Crystal, Thankyou both for the kind words of suuport and advice.  I am going to call the OPA, I think that will help.  My sister called the GP as concerned that dad was still really frail and not making much of a recovery from the pnuemonia. The GP told my sister that dad may have had pneumonia but the letter he had received from hospital stated that he was diagnosed with acute mediastenitis. 

    I am really angry with the consultant at hospital as we have not been told this.  Why are we being kept in the dark??  Dad will hopefully get his results of PET this week coming and will be able to ask docs questions then.  Does not instill much trust in the consultant when he cannot give us the correct information!   Dad has an MDT and we have an Upper GI nurse that has been assigned to us but we do not hear from her at all (Except at hospital appts with consultant).  Have been told the name of oncologist but have no other details given.   We have not been given any treatment plan yet and when we have questioned the length of time waiting on treatment we have been advised that dad was not fit enough for PET at time scheduled previously and this was needed to complete staging.  Hopefully this is the end of this process and we will be given all the actual details of what dad has (Fingers crossed). 

    On a more positive note today was a "good" day.  He managed to eat a few things and keep them down (Horray:))

  • Dear Leisha, Izzy, Crystal, Lynda, Steve, Pete, Antonia and everyone....I feel so much for all of you, like a family I have never unfortunately had and we are sadly drawn together by a dreadful disease but I feel I know you so well, better than nearby friends who cannot understand what we travel through, that I want to ask you to come by and visit and share some fun while we can, and I worry about you and think of you and I suspect you all do the same.

    I do want to say though that to those newbys that you really must stand your ground and demand the best treatment for yourselves  and/or  loved ones...those who shout loudest get the best treatment...not very British, but who cares...we don't need to be the best losers any more!

    Nighty night and thinking of you all...much love, Sue x

  • Sue

    Although I don’t post so much these days, mainly due to work commitments and lack of energy, that does not mean I don’t often look in and think of everyone here, sometimes the news from some of us is not good, but that should not stop us posting for it is often the only place we can truly be ourselves, surrounded by friends who understand and share a similar struggle and without such friends we may have to tread this fearsome journey alone; while we have the support or our friends we shall not be totally alone in our times of need.

    Steve

     

  • Dear Sue

    What a lovely thing to say and like you, I regard this place as a small, close-knit family where we can share our stories, successes and sorrows.  Who else could know us better than all those here who understand this particular journey we make.  Here is where we can be absolutely certain that people know and understand one another through shared experiences.  Everyone here is in my thoughts.

    Crystal xx 

  • Hello Susan,

    Thankyou for such kind words, it is strange how people are brought together but I do think things happen for a reason. I look upon my last year and my cancer as a gift, one hell of a gift I grant you... and maybe be a gift wrapped in barbed wire... but because of it I have found such warmth in people, kindness and support in places I would never have thought to go and with people I would not have otherwise met.

    Life is for living, I think sometimes we dwell too much on things or worry about daft stuff when in the grand scheme of things... does it realy matter. People matter, I have....mislaid... friends due to my illness but i consider it their loss, not mine, the friends I have now are just that...friends, and I hold them dear to my heart.

    Take care

    Issy x

  • Hello squiress,

    I am only sorry that support and advice is all that I can do... I wish I could change so much for people. It is so hard to watch poeple you love struggle at a time when they need help the most. You are right to be angry. Don't hesitate in keeping in touch with the upper GI nurse, they don't often call you...

    I found 'Scandi Shake' much easier to take than Fortisip or ensure... still can get boring but it does have a more natural flavour as it is made with fresh milk. There is a Fortifuice you can get and use it to make up small jellies, not too heavy and slip down well... may help to have more good days.

    Take care

    Issyx

  • Reading all your posts make me so glad that I have joined this forum.  When the day just seems as its if its not getting any better I read your posts and it makes me feel so much better.  Got call from hospital today and have appt to get results of PET on Wednesday am.  Dad was very quiet all afternoon - think he is reflecting on what he may be told.

    Hope everyone is well and will keep you posted on results.

    Take Care

    Lynda x

  • Well we have had results. Dad has ardenocarcinoma T4,N1,M0.  They have also found another primary in the rectum which is T3, N0, M0.  We are absolutely gutted.  Chemoradiotherapy is the plan but need to get dad stronger first.  NJ tube was fitted 2 weeks ago and he spent over a week in hospital with numerous problems.  He is now home but says his throat is sore and thinks its still the tube.  Docs have said this will be in indefinately at the moment.    Docs have said that due to the performation in the gullet the cancer cells are now in the chest cavity which is why there is nothing they can do to eradicate it.  I think it just a matter of time before we have secondaries in the lung etc. 

    Last 2 weeks just been such a blur, dad asked me yesterday to pick up papers for him to make his will.  Hopefully get chemo started mid to late august.  Not been online a lot recently but hope everyone else is doing ok.

    Lynda x

  • Hi everyone

    Well it is now almost 10 weeks since Derek had his stomach and a quarter of the gullet removed, the recovery has been hard and long but we are finally there, he is doing fantastically, he looks amazing and everyone who sees him says they cant believe what he has had done because he looks so well, we have been back to Christies today to see the Oncologist and he is really pleased with how everything has gone, they are confident they have got it all out but as he said it can come back, we all know this and it didnt upset us to hear him say it, because lets face it we are not stupid are we and know how cancer works, the reason the oncologist said this is because Derek is going to be having 3 more rounds of Chemo as a mopping up process and oncologist told us they are doing this purely as a precaution to try to stop it coming back and in case any cells have broken away.

    Derek is eating well although he does forget sometimes how much he has to chew his food and swallows to quickly then it gets stuck, but not as bad as before the op, since his diagnosis in December last year he has lost just over 4 stone altogether, but he has been a stable weight for the last month now so hopefully we may be on the uphill climb.

    Overall we are really happy and feel we had a very positive appointment at hospital today, hopefully it is onwards and upwards from here on in, its so nice to have something positive to post instead of negatives.

    Thanks everyone who has helped me and supported me while all this has been going on, and hope everyone keeps fighting this demon and dont let it beat you, remember it can be beaten,  live life to the full, because that is what we intend to do, we feel we have been handed a lifeline.

    Take care and look after yourselves and each other

    Steph

  • Hi there

    My name is Jo and my dad has been diagnosed with OC; with secondaries in the liver... was a shock for all of us.. but he is very positive about everything.

    Started as ulcer like symptoms and stomach aches- put it down to stress after an accident at work... and within three weeks of seeing the GP he starts chemo on Thursday....

    Mum and I will be looking after him (despite his groans) and are trying to get him to rest and eat if possible..  any tips for soft diet to make it taste/look appetising??