Cycle One Done - This has been the toughest week!

[SunshineAhead]

This is a long post - please accept my apologies in advance.

Cycle one effectively done (next week chemo free just consultant follow up).

Week started Monday with picc line. That was a little uncomfortable but nowhere near as bad as I thought. Unfortunately I mentioned some back pain and the team insisted on escorting me to to the Acute unit to have it checked out before leaving First a chest x-ray - waited results - apparently clear but Registrar then asked for a spinal x-ray as well and they did more bloods despite these being done downstairs when the line was put in (at least this time I had the line!!). Any way, it was my birthday and I ended up spending the whole day at the hospital to be told just after 6 2nd x-ray was ok. Now I know they like to check things out but really 8 1/2 hours having 2 x-rays and awaiting results as far as I am concerned is not acceptable! I'm intending to raise it as an issue with the consultant at my appointment next week. Not only did I spend the entire day there unnecessarily but also I was taking up a bed for somebody far more in need than me (there were others waiting outside on chairs!!!!!). I see no reason why those x-rays could not have been checked far more quickly like they are in A&E departments.

Following from that, Tuesday was day 2 chemo!! This was actually capsule not IV format. So given a tiny solitary anti sickness tablet (which is already on my record as does not work for me) then 10 mins later given the chemo capsules. As I swallowed them I was told that was it and I could go straight away and off they went. I found that to be very strange. They know I live alone and was intending to go home on public transport alone. I did actually feel hot and not really that well but not quite nauseous but they didnt ask! By the time i got home within about an hour and a half I felt really unwell. All I wanted to do was lie down. I felt really sick within a couple of hours and in fact within 2 more hours I had 4 really bad episodes of vomitting one of which i could see i had brought at least one of the chemo drugs right back up whole!!

I rang our local acute unit and all they would say is i should expect this as chemo side effect and that I should ring 111 for out of hours GP!! I did this and luckily for me they put me on priority list after call back and Doctor was at the door within the hour. That was embarrassing as it was almost 10.00 pm by then and he came in one of those emergency paramedic type cars light flashing and everything!! He checked everything, BP, temperature, Sats (something our chemo nurses never seem to do either before chemo or after it and I find that strange). His opinion was a very severe reaction to the chemo drugs and that the anti sickness they have given me is clearly far from sufficient and it maybe that pill format is not appropriate for me - in fact he thinks it would have been more appropriate for saline fluid to have been given beforehand any way? (I don't think our hospital do that when you are having pill version only on week 2 which is venorelbine - I get Cisplatin IV and vinorelbine week 1).

The emergency doctor gave me some new anti sickness tablets (tiny little things you do not swallow but place on the gum underneath your upper lip and let them dissolve which takes up to 2 hours.) They are called Prochlorperazine. These tablets are the only thing that has helped me through the week. The emergency doctor actually instructed my GP to prepare an immediate prescription for me following morning as he was only able to give me 8 tablets and I now have this.

Thankfully I feel a lot better today and have eaten really well (just as well as I lost 4lbs!). I really don't like to be critical of the NHS but i believe my experiences this week are not acceptable and I actually found it distressing and concerning. I know they were looking for possible mets in the xrays as I asked (they did not volunteer the information). I asked if I could have a private CT scan as I prefer to have it checked thoroughly rather than wait for several weeks if it continues or gets worse but all I was told is that it would be quicker on the NHS. Maybe it would but that's only if they decide its needed and as the x-ray didnt show anything in particular apparently that would not be done yet! X-rays provide limited information as we all know so considering I had a clear PET scan pre op save for the solitary tumor on my left lung by mid June what did they think an x-ray would show in such a short time? Also, I really dont understand why the Oncology information booklets you are given say that if you experience severe vomitting twice or more in 24 hours to contact the urgent phone line immediately(and I had 4), when all they are going to say is ring 111! It's pointless!

I am intending to ask that firstly they continue the meds I now have without deviation as they clearly work but i also intend to ask that for my 2nd round of chemo that either they provide it in IV form with a pre saline drip first or at least provide the necessary additional anti sickness before i take the capsules in IV format so I know it will remain in my body! As far as I am aware at least part of the chemo they gave me did not stay in my body so pointless! I am also going to insist on a CT scan now NOT wait for symptoms to get worse. I didnt have these symptoms before chemotherapy started, it seems unlikely to be caused by the chemo itself or at least that is the impression I got, so there is clearly something else going on. It may just be a muscular thing but really why would you wait for something to get worse when it could result in a far more serious condition and therefore prognosis.

I would be very grateful for anyone's feedback on all the above. Has anybody else been through a similar situation, or suffered similar effects with chemo whether skeletal/muscular or sickness symptoms and if so, what actions were taken and/or outcomes? This would help me when discussing the matter with the consultant on Thursday. Is there any point in ringing the urgent oncology out of ours line if (and you can hardly speak any way for gagging) they are NOT going to ask you to go in but tell you to ring 111 shouldnt it just say that on the flipping booklet instead to save wasting time! Or should you ring 999 if you are really concerned regardless of what they say. Apparently, according to our local oncology hospital at the introductory meeting they tell you NOT to ring 999 as you will get caught up in the system and treatment may be delayed! What a load of rubbish! I am sure if I had had a high temperature as well and dialled 999 (being on my own I would have no choice) an ambulance unit would be perfectly capable of ascertaining that as I am a chemo patient where the correct place to take me would be!!!!!)

I am really sorry this is such a long post but I felt I had to put the whole story in. Thank you everybody.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Well this is a birthday you will never forget !

Reading through your post,in relation to repeating your bloods, they may have wanted to check different blood levels than was previously requested earlier in the day. Also, sometimes X-rays take a while to be reported by the radiologist depending on how many are on duty and the volume of work on the day.

Ii was wondering if you told the chemotherapy nurses that you were feeling hot ,feeling unwell and nauseated after taking your medication. I would have expected them to address your symptoms but if you didn’t tell them they might not have been aware of this. Please ensure they know about how unwell you were after your chemotherapy treatment especially since you live alone, this must have been very distressing for you.

It's reassuring that the Prochlorperazine worked for you. It’s a good idea as you said to mention to the staff that this was very effective and hopefully they will prescribe this in advance to address the nausea issues before your next chemotherapy treatment. As regards the CT scan you should speak to the oncologist managing your care at your next clinic appointment re your concerns.

You may want to discuss your issues with your hospitals Patients Advice and Liaision Service (PALS)who can help you try to resolve issues or concerns you may have from your hospital(you will get their number from your hospital website). They can listen to your concerns, provide help, advice, support and information about independent advocacy services available and assist and support you through the NHS complaints process.

You mentioned you take public transport I was wondering if you could ask your local hospice if they have a volunteer taxi service to take and collect patients from clinic appointments. It must have been very distressing for you feeling so unwell,on your own and on public transport.

I hope you have a better experience with your next round of chemotherapy.If you would like to speak to one of the helpline nurses please don't hesitate to call the Helpline Freephone: 0800 358 7200( Option2) Mon-Thursday 9.00-5.00 pm Friday 9.00-4.00 pm

Kind regards

All the team at the Roy Castle Helpline

[SunshineAhead in reply to RoyCastleHelpline]

Thank you for your reply and all your suggestions.

I was not able to say anything about how i felt at the time as the nurse just disappeared straight after i swallowed the tablets and to be honest, despite not feeling too good beforehand the worse of it was about 10 mins after leaving the ward - they do not allow you that 10 mins to let it sink in you're basically dismissed straight away!

So far as raising issues with patient liaison goes, I have already raised issues with the hospital and different departments since my journey began in April. Believe it or not, there's a chain of events and they are all on record already. So you will see my issues and concerns are not exaggerations but genuine issues.

I deal with clinical negligence insurance claims in my employment for ATE purposes (in fact that's my only job!) so I am already aware of processes of complaints, which should as a first instance be referred to the treating consultant to allow remedy - I will be doing this tomorrow. I hate to complain because 90% of the staff and indeed, of my treatment, has been excellent but some of the errors and omissions have been either potentially serious or distressing and therefore I have to raise them for my own safety. An example of this is that I have several allergies on my medical records and because of this my ID bracelet is normally red so medical staff are alerted. For some reason the Oncology department do not give me a red bracelet and therefore every single time I have to explain to them my allergies. This is concerning, because when I had my first blood test done and again following my first chemotherapy treatment, nurses slapped plasters on my arm before I knew what they were doing and I had to rip them off immediately in front of them reminding them I am allergic to plasters! At the very least it brings me out in a nasty rash. Imagine if I was asleep or drowsy the potential consequences of them not noting a patient's allergy. I have to raise this tomorrow - I have no choice. if no remedy or satisfactory outcome is forthcoming then and only then I will consider escalation. My employers will make an official complaint/claim on my behalf but I truly wish to avoid this a it's such a last resort action in my view.

Sadly, due to lack of funding and demand, patient transport is only provided for persons on benefits or with registered disabilities, for which the cancer itself is not considered - I've already looked into this. I could use a taxi but cannot afford a fare of £10 a time every time and again, Local Authority financial assistance is only provided for persons on benefits or with registered disabilities so basically I just have to get on with it. Not the end of the world though - there are people far worse off than me.

I will let you know how I get on any way. Thank you

[BellaBe]

Hi Sunshine ☀️

I really feel for you having such a rough time but can completely empathise as I had the most severe bad reaction to these drugs my oncologist had ever seen.

After the first round of both I ended up in a&e feeling like I was dying ( no joke ). I waited 3 hours lying on chairs just to be told that I ought to get used to it as this was just side effects from chemo. Useless and distressing.

I’m not sure you can have veneloribine in IV form, I’d like to think I would of been offered this as I had such a bad time with the tablet. By the 3rd round I was given a driver ( which is a machine you carry round with you with a needle attached inserted under your skin which gives you anti sickness meds controlled over 24 hours so you always have it in your system) this did help with the nausea but I still got terrible toxic diarrhoea.

The AOS nurses on the cancer unit were amazing and I couldn’t have got through it without them, they were always there for me as I was often on the unit through dehydration as I couldn’t keep anything down. Do you have access to this service? It truly is invaluable.

Do ask about the driver at your next appointment as this may be a good option for you.

Good luck and best wishes.

Bella x

[SunshineAhead in reply to BellaBe]

Thank you so much for your reply and the information therein. I see the consultant tomorrow so I am as a first instance, going to what the emergency doctor advised, most importantly that a stronger anti-sickness treatment be given such as an IV (which is what the gave me when I had the cisplatin) and possibly a drip as well in case which will help preventing immediate dehydration. One tiny little anti sickness tablet was simply not enough. Vinorelbine is available in IV format but not sure if the NHS, or my hospital in particular use that form - can only ask I guess. I think I would rather try without a driver in the first instance already having a PICC line in one arm but the suggestion is appreciated. Thank you. The anti sickness medication the emergency doctor gave me was much more helpful and hopefully that in combination with something else will do the trick. I will let you know

[Gillo22 in reply to SunshineAhead]

I had Cisplatin and Vinorelbine by IV, they didn't want to give the vinorelbine tablet as they said the side effects were worse. It is available on the NHS.