I was diagnosed with adenocarcinoma two years ago
no symptoms it was found as a result of investigation into a chest infection
i had a 10cm tumour removed together with most of my left lung
i had four months of very strong chemo
after feeling euphoria at being alive I am now starting to struggle
how do you cope with the poor survival rate
Sorry to read this. I think it best to set up a new thread to ask this question as this one is just my story on it and I would not want your post to get missed and lost within it. If you are un sure how I will do it for you.
There are no perfect people, only perfect intentions
I’ve been given 5% by my oncologist and I’m struggling now after the initial euphoria of being operated on and chemo survival
Hi, I’ve just read your response. Would you do it for me - I’m something of a technophobe
I am home now, they released me yesterday. Sorry this is probably the longest post ever by me. Sorry for the repetition but to keep it all in one place. I also think it may be long as a couple of other things happened too.
Thursday I suspected I had a UTI (I thought I had one on the first cycle that seemed to clear) and it seemed to be getting worse. I phoned the emergency chemotherapy line to ask if I needed to let them now, or see them or should I just go to my GP. I wasn't running temperatures or in any other way feeling unwell. They at first said GP, then asked where I was in the cycle and I said I had it the Tuesday the week before but completed the tablets on the Thursday before. Apparently it is days 7 - 10 of the cycle they are on high alert so told me to come in to have my bloods checked.
They took some blood and I gave urine. Turns out it was a UTI but my bloods said I had neutropenic sepsis with a count of just 0.26. If you have a reading of below 1 they say you have it (usual range is supposed to be 1.5 -7).
I then had to be cannulated (this took 5 attempts using an ultrasound the last time) and the IV antibiotics were started. I then had to go for yet another chest X-ray, which all was fine.
Then I was taken up to Neutropenic room. I had seen people post about it, but didn't realise the amount of precautions they put in place. You really are in isolation. There were double sets of doors to my room and a sign outside to not to enter without a nurse's permission. Every time some one had to come in they needed to but on a new gown and remove once left. They do not allow windows open and you must stay in the room. They are also restrictions on what you can eat and drink too. As in milk which has been opened recently and recommend cooked food rather than things like sandwiches with chicken etc.
I was put on constant fluids and given antibiotics when prescribed for Thursday and Friday. They gave me a different antibiotic about 4am which I then threw up after. More bloods taken Friday Morning and more again at lunch time and my haemoglobin came back that I was also now anaemic I think it was about 7 (normal range for woman is above 11.5). Also my platelets were continuing to fall but were still ok for now. It was in the evening so they decided to do the transfusion on Saturday as they give the first unit over three hours and the second over 2. You also get checked frequently during the transfusions, so starting it late would have meant I would be kept awake all night. I felt a lot better after, I had a frontal headache for two days.
Now this is hard and not something I post about but obviously I know there is the possibility it could happen. I cannot recall if this was Friday or Saturday. I have mentioned when I was in the hospice. This was the first time the doctors started the discussion with me. They very sensitively said to me, not they were expecting it to happen, but if I were to pass away in my sleep, do I want to be resuscitated? I knew my answer would be no to this, but so shocking to be asked, especially when you are feeling so unwell. It made me sad and I lay awake wondering if I would get to go home again. It's on my notes now but I also need to go to my GP to fill in a form to make it formal and told to let my family know my wishes as especially at my age, it may be argued against not trying to intervene.
More bloods Saturday and then I had the transfusions started. It started and when they checked after about 10 minutes I said it's quite achy with a throbbing. They turned down the speed and it felt better. About an hour in I called the nurse, it was starting to hurt again and when I looked it looked swollen and was already showing it was bruising. The vein had tissued and it was going under the skin rather than up the vein. They stopped straight away and the cannula had to be removed.
After all the hassle of the first cannulation and I have troubles every time. Sometimes even just bloods take several attempts, I am now quite anxious about it now and twitch which I know is not helpful, but most of the time they miss. My veins are deep and narrow so it is really uncomfortable me at times. I had numerous bloods taken recently, so you can imagine how fed up I was. After the first cannulation, I used to give them two goes, but said no only one and if they miss no more attempts.
Second cannulation was the same. Two nurses had looked and I explained how difficult I am and often they use heat pads, vein finders or even now ultrasounds. One doctor tried in my foot and didn't manage which is fine. Though painful. I kept saying even the anaesthetist miss to emphasize how difficult I am. I went through all this with the second doctor and said one shot only. I also said unless your confident please don't try and maybe she would be better to get an ultrasound to assist. She didn't and thought she would be able. She missed, I was feeling really unwell and fed up by now. She wanted to try again and I told her she had her go and to get someone able to do it as it is painful for me. She started looking at my other arm and I kept saying no more, she kept looking and wanting another go, I told her how angry I would be if she missed again when I had said just one go. She stuck the needle in my wrist which is so painful, I told her to stop and she kept pushing the needle in which hurts more. I told to stop and if she didn't I would make a formal complaint. She couldn't let go because the needle was there but wouldn't take it out. I ended up calling a nurse crying to get her to leave me. They did manage it but it really distressed me and I felt I wasn't being listened to. I hated to complain but I did feel it went beyond not having to. I have left it that it is not a formal complaint but made her consultant aware to speak to her about it.
The rest of the transfusions happened and I felt stronger once they happened.
Sunday more bloods. They lifted the neutropenic as I was up to 4. Though Sundays bloods showed my platelets had fallen further and where at 23 (20 and below you need a platelet transfusion). They wanted me to stay in overnight to check them again Monday to ensure they had turned in the right direction which we all expected them to.
Monday bloods showed that they had fallen even further to 11 so I had to have a platelet transfusion. This was ok and they only take half an hour to do. I stopped the hand trembling after this.
Tuesday's bloods meant I have been released
I am due a port fitted Friday to stop all the cannulation and blood taking problems. So back Thursday for more bloods to make sure they are still high enough to do this. Then carry on cycle 3 Tuesday.
I have mentioned about how likely this will happen again at the next cycle and maybe getting extra bloods in between to check the levels as I had hardly any symptoms of being so ill. When I see my oncologist I will see what they plan to do.
So good to hear you are home, though I must say these posts are getting very expensive to read, it no longer involves a cup of tea it’s now a pot
Joking aside what a time you have had, roll on Friday when you get that port fitted, I know you’re not looking forward to it but to be honest if you can go through all that it will be a breeze and there will be no more of that messing around and pain. A couple of days now to relax and regroup, I hope you are feeling well in yourself despite what you’ve just gone through. I do hope the consultant speaks to that nurse, you held it together well I would not have been so restrained.
Hopefully we will see you over on the lung chatty thread later, as much as I like to read about your pancoast journey I don’t like to do it too often and I’m running out of teabags
So glad to see you are home at last. I really felt your pain when you were describing the needles! Especially the one in you foot! Ouch!!
I know you are anxious about having the port fitted, but at least it will stop all these know it all doctors coming at you with their needles! I think they probably will keep a closer eye on your blood levels now this has happened.
When is your next treatment? Hope you have some time to rest and recover before you go again.
Also hope you got some apple crumble in the end? If not I think you have every right to demand some.
Take care x
hi gina your having such a bad time. i feel a fraud no aches and pains our anything. we got to keep believing. TC hope it works out.
so glad you're home and that you are going to have a port fitted which should make things a lot easier for you when having bloods and stuff done.
I've got my bronchoscopy tomorrow and I'm really not looking forward to it , so I'm just going to remind myself how much you have to put up with and tell myself to get on with it.
take care xx
gosh you’ve been through a tough time but thankfully Home and recuperating.
i hope you continue to make good progress. It’s been a rough road but you handle it so well.
lets look forward to a brighter and easier time ahead
Oh my word you have been through it again, and so much more difficult when no one seems to listen. Have similar problems with finding veins with my daughter, one nurse insisted the vein hadn't tissued and she was imagining the pain, the doctors were worse. An experienced phlebotomist is the lesser of the evils but I'd expect in your situation even they would struggle.
Do hope the port fitting goes well and you recover quickly from this latest setback xxx
Hope bronchoscopy went ok, not sure if I'm still having one as they've made an appointment with a different surgeon just for a consultation, wasn't looking forward to it but as you say reading Gina's post reminds you it's the easy stage at the moment x
Hi Varmint & Gina,
well had the bronchoscopy today. Should've come with a warning as I normally have really good veins but the guy who put a cannula in on Tuesday when having my CT bruised my best one.
So this morning a nurse tried then a registrar tried and blew 2 veins in my hand . Sorry to say I did scream as it bloomin' well hurt. I finally let them go in my bruised one under scrutiny and directions from me where best to put the needle. which they managed fine.( I feel for Gina when she says people don't listen to her .)
Sedation was ok and the scope wasn't too bad just seemed to go on forever.
All done now thank goodness, just waiting for results
Well done Kacirh, good to get that done. Whenever anyone tells their vein stories, I can feel my veins shrivelling up in fear!!
Good luck with the results, hope you don't have to wait to long.
Currently have good veins but thinking that may soon be different
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