Shingles, neutropenia and bed shortages
Shingles, neutropenia and bed shortages First of all I’ve not visited the forums for nearly a fortnight as I’ve been in hospital. I’ve just read the bbq thread and would suggest that we all do everything we can to avoid introducing bacteria/infections of any sort while our resistance is low. Some infections can’t be avoided but while I was in hospital the diet I was put on was extremely restricted, In fact I couldn’t have anything uncooked, and I could only have fruit if it was peelable. I’ve got a comprehensive diet sheet for neutropenics which I will post if anybody wants it. I’m going to find out which days are likely to be the lowest as far as resistance to infection is concerned and keep to this diet for a few days around this time.
I woke up Bank Holiday Monday with a rash which to me looked like shingles (we were away at the time). I was due a treatment on the Tuesday and they confirmed shingles and gave me some strong anti-viral tablets and deferred the chemo for a week. When I got home I didn’t feel brilliant but assumed that was how you feel with shingles. Unfortunately that evening my temperature went through the roof and I had to go to A&E, not an experience I want to go through again. Luckily I had had a blood test that morning so they had a starting point and once they had done another one it was obvious my white cells were taking a dive. I was officially neutropenic.
Of course there were no beds anywhere in the hospital and I needed isolating. After a night on a trolley I ended up in a side room on the the eye ward for 3 days, followed by 3 nights on the private wing as the eye ward closes for the weekend. and then 5 days on the haematology ward where I should have been in the first place. All this time I am having strong intravenous antibiotics and antivirals for the shingles and as the nursing staff on the eye ward weren’t qualified to deal with canulas they had to call a doctor if it needed changing. I remember one of the chemo nurses saying she would never let a doctor near her with a needle and now I understand what she means. My right hand was badly bruised and some of the veins will need a lot of recovery time.
I wasn’t sure if the Medical Consultant under whom I was admitted and theHeamatologist had actually talked to the onocology department, and after 6 days I got a bit upset and asked to see someone from oncology, expecting to see the research nurse. As it turned out the doctor from oncology came down and was really upset that no-one had picked up that I was in hospital. She checks the list everyday but you wouldn’t expect chemo patients to be on the eye ward. On the plus side they have decided I don’t need part 2 of the CMF this time round as I obviously got too much last time, and the dose will be reduced in the hope that this doesn’t happen again. My timetable hasn’t been affected yet.
Anyway, when I got onto haematology the experts wanted to give me something to boost my white cells (GCFS, which I had on the first part of TACT2 so I know it works) but couldn’t do anything without talking to my oncologist, who wasn’t in favour of the injection as it would affect the trial I am on, and anyway he says once the neutrophile count starts to pick up it will rise quickly, which it did, 0.2 on Thursday,0.5 Friday and 1.5 Saturday, they let you go home at 1 so that was that.
I’m back at the hospital for an aromatherapy session in the chemo. clinic on Monday which I am looking forward to, and back for another round of CMF next week which I’m dreading as it is possible that the neutropenia might happen again. If it does I hope I notice between 9 and 5.30 Monday to Friday as I might avoid the A&E department that way. The staff are brilliant and do all they can but the system sucks.
Time is actually going quite quickly as I always seem to be working towards a time-table and on the plus side, now that I am on CMF my hair is sort of starting to grow back although it is going to take months, and having a little break from treatment my taste buds have recovered so I know they are right that things do eventually get back to normal.
Take care everyone
Ollie
inspiration Hi Ollie
Poor you having to go through all that, but having said that you are seemingly coping with it extremely well and are very brave to have gone through all that, you seem like a true inspiration and have great words of wisdom…
best wishes loves and hugs and thanks for the post I hope people take note espeially about the BBQ food…
Love
Lucy
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Shingles etc. Hi Ollie! I’ve just finished 6 x taxotere and I got shingles after the first one and neutropenia after the second, which also landed me in hospital on iv antibiotics. Like you, I had the dose reduced subsequently and didn’t have any further major problems. I do hope you’ll be the same.
All the best!
Feeling better Its nice to hear that reducing the dose can make a difference to the white cell count. Hopefully the neutropenia thing won’t happen again but if it does I’ve got an idea what to expect.
I don’t feel particularly brave but I think you have to be assertive and insist on getting answers to your questions. If I am at home I can ring the chemo nurses or the breast care nurse and get advice and reassurance, In hospital you are removed from this sort of support and I just felt I was being treated like a condition or a bunch of blood cells and no one was interested in the overall picture. I know the staff are very busy but some of them are better than others at dealing with people.
On the plus side I was back at the chemo unit on Monday for an aromatherapy session which was fantastic and well worth taking up if you get the chance. I’m going back for another one next week before my next chemo. I saw the research nurse on the way out and she is confident that reducing my next dose of chemo will reduce the risk of neutropenia. Here’s hoping.
Take care everybody
Ollie
Hi Ollie
I am so glad that you are feeling much better and at home now…best wishes for your next chemo and I hope everything goes well for you and that you don’t get ill again be thinking of you…
Love
Lucy
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