I was diagnosed with Hodgkins Lymphoma today after finding aI was diagnosed with Hodgkins Lymphoma today after finding

Paula - a chemo orientation? You are getting treated better than I did. I got a piece of paper with the list of the drugs on it, and the side effects, and I was told to buy laxatives and stool softeners - that was my "orientation".

@ CCaldwell: Sorry to hear that you had a dodgy chemo orientation. At my first chemo, they did an info orientation at the start for about 30 minutes. They went over what to expect from getting chemo, many of the possible side effects and advice to help deal with side effects. I thought it was fairly good but it was a bit of information overload and since they had to cover all the worse case scenarios, I could see it making some people much more worried about chemo. I also got a thick information pack with fact sheets covering a lot of what was mentioned in chemo orientation. There was a bit of advice mentioned in the orientation that wasn’t all written in the fact sheets, so the nurse was kind enough to manually write it down for me, It really makes me appreciate my hospital and nurses much more when I hear of cases like yours.

Hi Chris. Did you get my note about where I live etc? Not sure if you did..

@paulap293: Hey Paula, I didn't get a port or picc, at the beginning of each treatment the nurses put in a new cannula. I wasn't even given the option of using port/picc and thought that since I was only getting chemo once every fortnight maybe the doctor thought I didn't need it. After about 3 months into treatment though, the nurses starting having a harder time poking my veins to do blood tests or chemo, so maybe a port or picc would have been good.
Regarding how many people can come into the outpatient chemo rooom, usually most will bring one support person, however I occasionally see two support people come in as well without issue. There are also several that do chemo alone all the time (like me). I personally prefer doing chemo by myself as the treatment is only a couple of hours and I can just relax and watch stuff on my iPad or talk to the nurse administering chemo as they are usually friendly.
Anyway, good luck with all your upcoming treatments. I'm sure it will all turn out fine, especially since you seem to live such a healthly lifestyle. I only have 2 more chemo treatments left this month, then 3 weeks of radiation next month so really look forwarding to finishing mine off.
By the way, out of curiosity did you see my initial post that I sent to you on Mar 27? I'm still not sure if that one went through or not.

Yeah, they aren't super coordinated at UCLA. I had started with one Oncologist, who was great with a great NP assistant, but they moved to Irvine after my third visit, just before I was scheduling my treatment. I just wanted treatment, so I could get better, and wasn't looking forward to all the drama of finding a new Oncologist.

Oh Paula. I'm the same way! I'm a health and fitness coach and Im so active and eat so healthy. My lump was found in my neck by my massage therapist back in October and it's taken this long I determine. I had blood work after blood work, needle biopsy, ct scan, it all came back FINE. But every dr told me to have the lymph node temoved for biopsy. I prayed hard about it and finally did it and this was the diagnosis. I found out on April Fools Day and I've just been so devastated. I can't sleep, cry all the time and just wonder WHY! Why?! God has a plan for us though and I feel like we MUST stick together and fight this fight HARD! Do you have facebook? Add me under Amber Flambeau Schierberg and we can message each other throughout all this. I've also turned to a complete plant based diet to help. I'm drinking lemon juice with turmac root and im taking Circumin pills as well. I'm trying everything natural as I can. I have dreams of having my PET scan done and them coming back saying "it's gone." Not realistic, but those are my hopes. I have also been given information on STAYING happy. That your body HAS to feel that way. It has to stay happy, which is such a hard thing to do right now. Love and hugs. Let's do this together!!!

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@Babylove1015 : Hello Amber. I am having technical issues this evening so I apologize for the delay in sending you a message. I just want you to know that you are not alone and that I am here for you! My cell phone number is 310-293-8030 and I live in Long Beach Ca. Where do you live. The shock should become more manageable in the next week or so… I had a rough day today too. My boyfriend left for four months. He is changing careers and starts his training to become an electrical linemen in a town that is an eight hour drive away. I had my PET SCAN today and totally lost it in the trailer outside the hospital. On the positive side, I had dinner with my friend Deb who let me feel how I was feeling and loose it at dinner with no judgement. I get it and am here for you. Chris and I have been talking and we both are here for you! xoxo sending you light and love! P.S: This type of cancer has a really great cure rate and we are going to eradicate it from our bodies and have a spiritual awakening as a result and live our lives to the fullest! Ok! Sound good? Love You!! P

Do you have facebook? If so, let's connect. Amber Flambeau Schierberg. Look me up!

@Babylove1015 : Hi There. I sent you a friend request. Your kids are adorable! Stay positive and ask the great spirit to guide your thinking. You are in fear as you allowed, you are only human right? We are going to be ok… I am here for you. Love P

Paula I don't see you. Can you message me on FBand then I can find out whoe you are. Please.

Good Morning Amber, I can't message you unless you accept my friend request. My name is Paula Parenzano. I am getting ready for another day with my sales manager for a ride along and then tomorrow is the big day. First day of chemo. Talk later.. Paula P

Hi Paula Chris and Hank,

My experience was in part like Hank's, with a needle every time, and veins so knackered by the end that I had to hold my arm in a bucket of hot water to help raise a couple. Other than that, though, we differ on this side of the Pond.

The first big difference is that we don't do medical plans or insurance. The National Health Service provides all treatment free of charge - we pay extra tax on part of our earnings to fund it, and boy, have I had my money's worth! The treatment is decided on clinical grounds alone, not ability to pay for it.

As to the actual administration of the chemotherapy, we do that differently too, or at least my hospital does. I sat in an open room with a dozen or so other patients. The radio was on, usually BBC Radio 2 (try it on the internet - no ads!), and there was a team of doctors, nurses, ancillaries, whatever. I had my own lead nurse, wonderful Lizzie, for my first few treatments and sometimes after that, who put me completely at ease from the word go. If examination was needed, there were private areas to do it in. The staff moved from patient to patient, we talked among ourselves, offering little hints but otherwise talking about anything but cancer. Cups of tea, or coffee for continentals and Americans, were in unlimited supply. It was a bright room, and cheerful.

I suppose you would call it something of the Dunkirk Spirit, as we all kind of bonded in a way that can only happen when there is usually at least one change to the group each time as someone finishes treatment and a fresh frightened rabbit enters the headlights. An example: the football (soccer) European Championships began one chemo day, as well as a major cricket (look it up) tournament. The TV on the ward wouldn't work because the antenna had not been replaced after building work. Two weeks later, I arrived with a portable aerial, to find a dozen others already there.

My wife came with me to every appointment and to my first chemo - never go alone to that. After that, I told her she could stay home - I knew what to expect, and there was no point in subjecting her to 3½ hours of tedium.

Paula, I'm glad your mum will be there if your boyfriend can't be. Apart from moral support and / or a shoulder to cry on, an extra pair of ears can be very useful. I got two bags of meds to take at home, with instructions that I would never have remembered alone.

Amber,

Welcome to a group that doesn't recruit, and that no-one wants to join! Much of this will apply to you also, but do not panic! This will soon be over.

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@TonyK - Where I received my chemo treatment, which unfortunately we pay for a portion, whether or not insurance covers, because no insurance here covers everything, I was on the 6th floor of a building, 20 blocks from the beach, and some of the chairs had a nice ocean view. There were no radios or TVs, but there is WiFi now, anyway, and smart phones. There were/are partitions between the chairs for a little privacy, and a couple of shelves on the partition for personal belongings, where I would set my coffee or my water, along with snacks and my phone. They had a little area where the patients and support people could grab coffee or tea, and a water cooler (so at least that is the same as in the UK). The nurses were on their own schedules and I only got to know a couple of them. They were there to do the work of getting the IVs started, collecting blood, and switching the drip bags when it was finished. I rarely saw my Doctor...so I had to have him schedule me in, just to stop by my chair to check in with me (about 3-5 minutes of his time). I agree that the first treatment is scary and should definitely have support. I forgot that they didn't give me my anti-nausea meds prior to my first treatment. My husband had to leave, go to the pharmacy to fill the prescriptions while I was getting my chemo treatment, so he did leave me for a couple of hours, but he got back in time to take me home. I wish they could just hand us the bag of meds when we leave, but that isn't how it works in the States. My first treatment was at least 4 hours, with the first hour being having the IV set up and them drawing blood and then waiting for the blood work results. They usually start a couple of things in your IV (like Benedryl, Anti-nausea med, and a Steroid). Oh yeah, and one of the meds in the ABVD could react badly for some people so they inject it into the non-IV arm to see if you have a reaction, to know if they should not give that one to you (I think it is the B one).

Hey Tony, I live in Australia so the health system here is very similar to UK. I have private health insurance but I ended up seeing my doctors and hospital mostly publicly anyway, since it wouldn't have made much difference going privately.
I think my chemo experience is a mix between yours and Chris's. First I would see the doctor for 5-10mins to check my progress/side effects, white blood cell count, get medical scripts, etc. Then I would check in for chemo and get an Emend anti-nausea drug that needed to be taken 1 hour before chemo started.
In the chemo room it was all open, but fairly spaced out so you weren't able to easily to talk with other patients adjacent to you. We had our own TV and an extra chair for support people but no Wi-Fi access (I could use my personal mobile for Internet though). I would be given a reclining chair or bed depending what was available.
We also had a snack person who would go to each patient every 2 hours and offer sandwiches or a large variety of drinks and snacks. The nurses seem to get rotated a lot so I would rarely have the same nurse more than twice, however fortunately all of them have been quite professional and friendly.
The chemo treatment itself only usually takes about 2 hours, but the waiting time for the doctor or chemo might add an extra 2-3 hours (depending how busy it is that day).
At the end of treatment, there was a special chemo pharmacy next door where I can pick up the meds prescribed by the doctor. Some of the meds were free (government funded) and only a few things like Neulasta injections I would have to pay for.
Overall, I can't really complain about my chemo experience at hospital and thankful I am in Australia for my treatment, I sometimes wonder how much harder it would be having Hodgkin's Lymphoma in the US or other countries without decent public health care or medical insurance.

@hankrk : Hi Hank, how are you feeling slash doing?

Hi Chris and Hank,

The actual medicine bit of the chemotherapy seems pretty standard across all three countries, with differences in paying for treatment and picking up meds to take home, For me, any drugs prescribed by the oncology doctors were presented to me in a carrier bag at the end of the session, with full instructions on what to do with them. I prepared a spreadsheet to keep track of what I should be doing next, so complicated was it in the first few weeks.

Snacks! On my first session, after I had spent an hour or so with the doctors, I was told I was fine for chemo. Whilst I was doing my nonchalant frightened rabbit act, and waiting for Lizzie to start on me, another nurse asked what I wanted for lunch. I wasn't expecting this and asked what was on offer. "Only a sandwich and a drink, but all the food is prepared freshly in the kitchen here, so ask for whatever you want". This was encouraging, as the food in the rest of the hospital is awful. I asked for a cheese sandwich on wholemeal, salad, not pickle because I don't like that sort of brown sweet pickle, and a cup of tea, milk, no sugar. Ten minutes later, she returned with a cheese sandwich on white bread with pickle, no salad, and a cup of coffee with sugar. I looked at it. I looked at her. "Are you doing my chemotherapy?" I asked, nervously. She apologised, and went back to the kitchen. The young lady who had made it came out and apologised. Moments later, what I assumed to be the head cook in the kitchen came out and apologised. Then some smartly dressed woman with a clipboard came and apologised, leading me to tell her that I was not looking for a full public inquiry, just a cheese sandwich, with salad, and a cup of tea with milk but no sugar. It broke the ice for me - maybe they do it to every new recruit.

Tony - food would be amazing, but here in the States we have to provide our own food. People with longer chemo treatments can be seen with small ice chests, to carry food and drink for themselves and their support person.

Hi There, I was offered snacks but they did not look to appealing. I opted to bring my own little ice chest lunch box and had a turkey wrap for my mom and an avocado wrap for myself with terra chips, sliced apples, some peanut butter from Justins and some asparagus ( left over from last night ) Pretty good and smart to pack a lunch. Next time I will probably go myself and bring a sammy or salad. I hope you all are having a good afternoon. One down eleven to go! This better work!!

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I remember my first treatment, my husband went and got Starbucks from up the street and brought me back a cheese danish and latte. The other times, I think I just brought a granola bar. I had my sessions start at 9am, so I would really just be okay with a snack instead of a full lunch. Glad you went prepared. Hope you feel okay over the next two days. Lots of water, anti-nausea pills, and laxatives. Also, lots of rest. Take care.

@CCaldwell : The laxative better work tomorrow! Holy bloated belly! I hate that feeling. Took two probiotics, aloe juice and tons of water today and still no go. Tonight took the senocot that they recommended in the chemo folder and some more aloe juice. Tonight one or two more probiotics and god willing! Have a great night! Love P