just having a vent

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i have started the chemo, pretty heavy going, lots of side effects, the thing that has annoyed me, is the fact it takes me 2 hours to travel to the hospital and then 2 hours home again, so last week i had an appointment for a pre picc assessment, travelled the 2 hours to get there, only to find they had no record of me, so for an hour travelled the length of the hospital going from one department to the next, finally a kind secretary in oncology managed to track it down, so, go to the appointment and i was in there 3 minutes, she asked me 3/4 questions, i was annoyed, why can't they just do that kind of thing in facetime?, i then had a 2 hour journey back, i ended up sleeping 12 hours i felt so rough, so i didn't eat, drink or do my temp, this week i went for the picc, they asked me which arm i wanted it in, i requested the left arm, as the lump is on the left side of my neck and i have to sleep on my right side, i also have a weak left arm now, because of the lump as i find it hurts if i try to lift the arm, in my neck, so the doctor came in and said, i am putting it in your right arm, i don't like doing the left, (they also used a trainee doctor to do it and he messed it up, like i was a human guinea pig)which annoyed me as i now can't sleep on any side, then i had nearly 4 hour wait so that patient transport could take me back, i only got it that quickly because there was a cancellation, i have tried explaining to them to please not ask me to come in for a 2 minute appointment on 1 day, as the 2 hours there and 2 hours back is not conducive to my recovery, i just feel ill  mentally and physically afterwards, but they don't want to hear it. i ended up having a little 'discussion' with the oncology doctor as she wants me to come in the week of the chemo and i said, the 2 hours here and back and then waiting 5 hours for patient transport is going to be very hard for me, does anyone else get where i am coming from on that? she said if it is too much maybe i should be an in patient, all i am asking for is a little compromise, but i am feeling very much, things have to be done to suit the hospital and not the patient.

well that is my rant over with, feel better for that.

a lady on line who has been through chemo, said never listen to them telling you to eat what you like when you are having chemo, she said the 3 key things that help get through chemo

are diet - exercise and mental health  well being, which i tend to agree with, so people having chemo now, look after those three things to help you through

  • Hi Ichi So sorry to hear of your woes when you are not feeling great . It's like being kicked when you're  down. I think my first port of call would be to speak to your cancer nurse which you should have been assigned. There is being reasonable and being stupid and the second one appears to be in action which your nurse should deal with asap .  Good Sleep  Good  diet ,Moderate  exercise is the key and there is foods you should not eat when on Chemo which no one tells you one of them is Sushi and any part cooked meats off the top of my head . Good luck I hope you get this aggro resolved asap . All the Best Minmax 

  • hello Minmax, thank you for your reply, yes just venting, i am grateful for this chance to help save my life, but it would be nice if they could make it easier for people in doing so, if i am stressed out with travelling etc...it isn't going to help the recovery after a blast of chemo, i don't know who the cancer nurse is i have been assigned, do you mean a macmillan nurse?if it is, sadly, in the last few weeks i have only spoken to her twice, as i can never get hold of her, either out or in meetings, the only other nurse is the chemo nurse who puts the chemo in, sadly, cannot speak to her either, as she spent most of her time yapping to regular patients about her up coming wedding at the end of the room, so could never get her attention, almost wet myself a couple of times, because i couldn't get her attention to let me go to the bathroom, i know the hospitals are under staffed and underpaid, i don't think things will be resolved, if i bring things up they just get humpy with me, so i think the saying is shut up and put up. i hope where ever you are and if you are having treatment they are compromising with you instead of treading all over you as a person

  • Hi,

    I know it won't help but I have had similar problems, one and a half hour journey each way and an hour and a half wait for treatment which usually takes an hour. I asked if the treatment could be done done more locally and was basically told if you want the treatment it was this way or no way.

    Like you I am grateful to have my life extended, but I find it so stressful and I am just about getting over it when it all starts again.

    Just thought you would like to know you are not on your own, take care and best of luck.

    B

  • Hi ichi  I feel your pain , sometimes it's like banging your head against a brick wall getting things done  . Maybe if there was some way to address the traveling or if you could get someone to drive you etc . Anything to make life easier ..All the Best Minmax  

  • Hi,

    I finished treatment in May 2023.

    I had to travel 1.5 hours each way for radio and chemo.

    It was just about OK on the days that I just had radiotherapy.

    On the days that I had other appointments (oncology consultant, dietician, speech language therapy, nurse review) I had to wait around for hours and the day became exhausting. In the end, I became very proactive about saying what I could and couldn't do. I cancelled appointments if they didn't seem urgent or insisted that they were phone or video. It didn't seem as though other patients felt able to do this. I saw many terribly poorly patients waiting hours in the clinics, when turning up for radiotherapy was all they could manage.

    By the way, I don't know how I would have coped using NHS patient transport. I found a local volunteer/community car service and booked every single treatment day, before it all started. It wasn't free but it cost a fraction of a taxi or Uber... just to cover the driver's expenses. Maybe there is something like this in your area? They took me door to door and waited for me at the hospital.

    I hope things improve for you very soon.

    Steve

    Diagnosed Feb 2023 with base of tongue cancer, oropharyngeal squamous cell carcinoma (OPSCC), HPV positive, staging: T4aN2CM0

  • thank you for letting me know your own experience, i did voice my unhappiness to the oncologist doctor, she told me if i was struggling they would have no choice but to bring me in as an in patient,( there is no compromise with the hospital, it is on their terms or not at all), which wont be happening i have social phobia and am finding it very difficult to be stuck in a room full of people, i have to sit with my back to them and pretend they are not there, there is a volunteer service, but they will only do up to an hour wait, the chemo took 6 and a half hours to do, because the nurse who was administering it, was talking to other patients about her up coming wedding, so took longer, so i was left forgotten in a corner until she remembered again that i was there, the patient transport is hellish, the usual wait time to be picked up is 5 hours, i was lucky the other day, they had a cancellation, so only had to wait 3 and half hours to be picked up, so took me home instead, the only thing i didn't like, was, that it was a car and he had me and another lady in the back, then went to another part of the hospital to pick up another patient and was gone 15 minutes, he locked us in the car whilst he was gone, like dogs, i was too ill to even complain, i am just glad that it was not a hot day or that either of us became ill as we would have been stuffed, i feel like i am being stripped of my humanity, by this experience

  • thank you minmax, i had a friend taking me, but because of the friday fiasco, we travelled there 2 hours, then i was told there was no appointment for me on record, so we spent an hour walking up and down each department being sent from one after another for an hour, until as i said a kind secretary found the appointment, i was in there 3 minutes, then travelled 2 hours back home and was so ill from it all, i am not ungrateful for this life saving treatment, but they really don't help, you are trying to regain your strength from the chemo and then they are making you come in for 2 minute appointments, it is not helping at all, just setting my recovery back for the next treatment, so now my friend can't take me, it was too much for her to have to drive 2 hours there have a 2 minute appointment and then 2 hour drive back, that is why i have now gone to patient transport

  • thank you Bill, i cannot say i am glad that someone else is going through the same thing, because, it is awful to have to go through this, the chemo is hard enough, so i feel for you having to do a 1 and half hour journey to the hospital, you like myself must find it very frustrating that they cannot compromise on certain things, i think they forget they are dealing with human beings and just see you as a name, address and date of birth, i hope you are finding ways to deal with the journey there and the stress of it all, if i find a magic solution i will let you know asap

  • hello Steve, sorry i didn't see the bit where you wrote you have finished chemo, i do hope  it was all a complete success for you and are now in full recovery

  • hi Ichi

    We have a 45 minute journey to Dundee for 15 min appointments, we are out in the sticks.... use our own transport as patient transport/bus services are pretty grim here....We usually make a day out of it.... go to St Andrews or Anstruther for a meal....my wife does the driving....I sleep....and moan.

    Take care

    Peter