First steps

  • 11 replies
  • 66 subscribers
  • 694 views

Hi everyone. I’m just at the start of this journey. Received my diagnosis last Tuesday and booked in for my PET scan tomorrow. I have had an endoscopy and CT scan and my consultant has said that, at the moment, I am on a “curative pathway”. I’m trying to stay positive about that but I’m still kinda nervous about what the PET scan might reveal as it is obviously a lot more accurate. MDT are meeting this Friday so I should get the results back next week. I try to put it out of my mind but sometimes but sometimes I wake in the middle of the night worrying and can’t get back to sleep. Any advice about how best to deal with what the next few months are going to bring would be very welcome. Thanks

  • Hi Cool Blue

    I'm sorry to hear of your diagnosis, but hope you find some support and comfort through this forum. 

    It's a positive sign that you're on a curative intent pathway. My dad  was given the same treatment. This is probably one of the scariest and worrying times for you now, the waiting for the results of scans and not yet knowing what your treatment plan will be.

    In my dad's case, we met with his specialist team (consultant, specialist nurse) fairly soon after his PET scan and to hear the words 'its operable' gave us so much hope ( whilst feeling scared at the same time). Things seemed to move quickly from there and dad saw his oncologist who told us of the plan to try and cure him. He had 4 cycles of pre op FLOT chemo, followed by major surgery, and now is undergoing 4 more cycles of post op FLOT. It's not an easy journey by any means and there will be side effects (everyone is affected differently, and some are more common than others).

    I would say, try and stay as positive as you can. Dad was lucky ( if  you can call it that) in that there was no spread to other areas (shown in the PET scan). I remember hearing that filled us with positivity. We are in the North East so dad has been under the care of a wonderful team at the RVI in Newcastle. Can I ask whereabouts you are from? I'm sure you will be supported by a good medical team, and do lean on them as much as you need to. They will want to help and support you. Also use this forum as you need to, there are alot of positive stories on here, which are helpful. I wish you well on this journey that no one wants to be on, and am sending you strength and positivity x

  • Hi CMJ78

    Thankyou for the kind reply. I really appreciate it and it’s nice to know that this forum exists as a source of information from people who have trod the same path. I’m from Belfast. We have a specialised cancer unit at our city hospital so I know I’ll be in good hands. I think I’ll feel better once I have a definitive treatment plan to focus on. Hardest thing so far has been telling family and friends. I know I’m so lucky to have their support. I’m sure I’ll be back on here over the next few months looking for more advice.

  • Absolutely. Having the support of your family and friends will be important. Like you say once you meet with your medical team and know what your treatment planwill be, that will help you as you'll know the course of action then. Wishing you every success going forward. Take care x

  • Hi Coolblue, sorry you find yourself in this position and in this forum. I was diagnosed in March this year. Had four rounds of chemo and operation. I am starting second round of chemo on Friday.  Today I'm off to have endoscopy to stretch scar tissue from op to widen throat for better eating hopefully. Tomorrow I get a Picc line out in then chemo on Friday.

    I wrote my profile like a diary of events. If you want to read it just click on my name is picture icon to take you to it. It should help you get an idea of what's ahead. We're all different though so your journey may not reflect mine.

    Good luck going forward. Keep positive, at least you have a curative pathway. It's not easy believe me but you have a light at the end of the tunnel. Some don't.

    Best regards

    Geo.

  • Hi Geo,

    My wife and I have both read your blog and, believe me, it has been one of the most helpful sources of information we have come across so thank you for that. I have no doubt that we shall refer back to it again in the months to come. I know everybody’s pathway is slightly different, but how did chemo most affect you and how active were you able to be during the course of treatment? Was it four sessions you had pre-op?

    I wish you the very best of luck in the remainder of your treatment and hope that the view from towards the other end of the tunnel looks increasingly brighter. 

  • My timeline of events so far has been;

    End of Sept - started feeling a constriction in my oesophagus when swallowing. After a week or so there were no signs of an improvement so made appointment with GP

    12th Oct - GP appointment. He told me I would need an exploratory endoscopy but the wait time for this would be about 6 weeks. Decided I didn’t want to wait this long so took the option to go to private clinic

    17th Oct - appointment with consultant at clinic. Referred for endoscopy

    19th Oct - had endoscopy and CT scan. Cost was £2300 for consultation and both providers. If it’s saved me 6 weeks wait time then I consider that money well spent

    24th Oct - phone call from consultant to give me the cancer diagnosis. Next step to be PET scan

    26th Oct - received appointment for PET scan 

    1st Nov - had PET scan at city hospital cancer unit

    I’m happy with how rapidly things have happened so far and fingers crossed that this continues…

  • Hi Cool Blue,

    Thanks for your kind words. I went for a endoscopic stretch today but they said my Oesophagus looked good and was wide enough so just a couple of pictures taken. Nothing to worry about. Not a very nice thing to have done but worth it.

    My first four rounds of chemo went something like this. 

    1. Felt sick, tired, fatigued, slept a lot, runs, no appetite much.

    2. Same as 1 but more pronounced. Also lost my sense of taste. Everything tasted like metal. Eating very difficult. The GCSF injections that you have to give yourself at home made my whole skeleton ache so bad that I called the response line and they advised me to go into hospital which I did. I was isolated in a side ward and given intravenous paracetamol and morphine which helped. It was a night when the doctors were in strike. By six o'clock in the morning with my wife sitting on a plastic chair for eight hours and still not seeing a doctor I signed myself out and went home. The following day I saw my GP and was prescribed tramadol and paracetamol for the pain which worked.

    3. Same as 2 really but no more bone pain. Then contracted COVID and was brought back into hospital for three days and treated for an infection with anti biotics. Had a week off chemo.

    4. Again same as 2 but greater issues with taste and eating. Headaches. Really tired and sleeping a lot. Took a good month to get over everything.

    Hope this helps with what to expect but you may be different. Good luck. Keep positive and you'll get through it. Keep off Google. Stay on here or talk to your cancer nurses and call the rapid response line anytime.

    Best regards 

    Geo.

  • Hi Cool Blue

    That is a quick timeline so far. If you can afford to go private, I don't blame you, can't put a price on your health. Everything seems to happening quickly for you, which is fantastic.

    I remember dad got his confirmation a couple of days after his endoscopy which was end of February. By March so many things happened including CT scan, PET scan and meeting with his specialist team to talk through treatment plan. His pre op chemo began on 26th April until 7th June then surgery in July. I do feel my dad has had excellent care throughout and things have happened quickly ( which is what you want!)

    I hope your PETscan is as positive as it can be. It does sound like you've responded quickly to what's been going on, so  hopefully it's been caught early. Best of luck to you x

  • HI, im also from Belfast, my partner was treated in BCH also, once treatment kicked off it all went pretty fasy, he was stage 3, diagnosed Dec 22, chemo starte dmarch 23 4 rounds FLOT, surgery was May...a few weeks recovery and follow up chemo ended in Sept 22.  He has gained all his weight back approx 4 stone loss he was big and carried lots muscle before.  Hes back at the gym although cant do as much or as heavy as he gets tired quickly, however hes still here and doing well.

    Now its all kicked off for you im sure you will get a treatment plan pretty soon, I wish you all the best I was happy with how fast it all went but not so happy once treatment ends kind of left to it really.

  • Hi Sam how did your guy get the weight back on  I would be greatfull just to get half my 3 stone back on went from 13.5 to 10.8 ! back at the gym myself I understand he has been taking creon . I was prescribed  creon for a month .trued protean shake but gave me abdominal pain . 
    thanks