The journey begins

Hi Cl4r3 ,

As much as none of us wanted to embark on this treatment journey it’s good that you have an approximate date in site. I can completely relate to you just wanting to get going now. I too had a HIV test prior to starting. You’re having exactly the same treatment regime as I did although mine was 24 days opposed to the 28 you’ll be going. I had very few side effects from the chemo side of things & skin reaction & some radiation cystitis from the radiotherapy, the combination of the two treatments did leave me pretty fatigued though. 

It’s great that your team have supplied you with a cushion & that you’ll be getting a sitz bath. I used lots of Epsom salts in my baths & lots of aqueous type cream to moisturise the skin that was going to be affected. I also did some batch cooking so I had meals in the freezer for when I just couldn’t be bothered cooking good job or I’d have lived on toast lol. I arranged transport for the hospital in case I was unable to drive too. It’s really all the practical stuff you can get in place over the next couple of weeks. 

With working from home you may find that you’ll be able to continue throughout most of your treatment as long as you give yourself plenty of breaks, just listen to your body & rest when needed. I refurbished a dining room suite out in the glorious sunshine in the garden during week 3 of my treatment! 

Hopefully these next couple of weeks will fly by & your start date will be here before you know it. Thinking of you.

Nicola 

Hi Cl4r3,

It's not something to look forward to, but there's a weird sense of satisfaction, knocking out the prerequisites and settling in for business, isn't there? And knowing you're that much closer to being cancer-free.

I don't know how much your providers provide for you, but I keep a peri-bottle in each bathroom even now, more than a year out of treatment. I know that if I can't get to my favorite throne, the one with the bidet attachment, I can still have some touch-free cleansing. I probably will keep them around forever. Why not make it all that much easier?

A good friend set me up with a big Cancer Basket (actually a sewing kit!) with bottled water, ginger chews for nausea, unscented wet wipes, a wonderful thin-but-warm blankie and a bell called The Summoner to bring my staff running when I needed them. Clear your schedule- no company other than people helping you, no appointments other than your care, set up dog walkers or any other household help you might need for treatment and recovery, stock up on Ensure and easy-to-digest meals in the freezer, line up your favorite books and movies to help distract you when you're up for them.

Hugs

Suz

Hi CL4r3, 

I recommend having epson salt bath for psoriasis eczema and dry skin, after going a toilet wipe yourself with e45, and ask them for A barrier cream I had Sorbaderm because the pharmacy didn’t have Cavilon which is what I was originally prescribed to me, they was so impressed with my skin condition they asked me for the name of the cream Sorbaderm to give to others.

goid luck with everything 

Laura x x 

Hi

I’ve just finished my 28 days..

Definitely the sitz bath and Epsom salts and start moisturising now- my team recommended Aveeno. 
I also bought some of the strata XRT gel- which was expensive but I think it helped keep my skin in tact- it’s sore now but the nurses said that it’s held out really well. 
Make sure you have plenty of painkillers ready- everything builds up gradually but it’s good to have supplies in ready for when you can’t face going out. 
I did some meal prep too- just made a few extra dinners and put them in the freezer ready. 
It might be good to stock up on beige foods- crackers, biscuits etc in case that’s all you can face. I’ve been drinking ginger beer too. 

Good luck and you’ll be fine. Please ask if there’s anything else that would be helpful xx

Hello Cl4r3

You already have some great advice, and I totally understand you want this over.  The treatment, in the grand scheme of things doesn't take a great deal of time although it may seem like it when you are in the midst of it all.  All I can add is make sure you are stocked up with ready meals, quick food, anything at all that takes your fancy and most importantly, if you need time off, that you can take it.  The body is trying to repair itself after each chemo/radiotherapy session and you might find the fatigue is such that you just want to subside onto your bed.  So if you have family members and friends near, now is the time to enlist them to help you through this.  And I do hope that if you need to take time off work, you can.

We are here to offer a listening ear at any time, we have all been through it and there is a lot of support here if you need it.

Thinking of you - you will get there!

Irene xx

Hi Cl4r3

i think you have got lots of ideas from our lovely contributors and I will add that I bought some soft Cotton boy short knickers a size up from Amazon and the brand was Iris and lilley, very reasonably priced which were lose and comfortable for those sore nether regions. I also got some harem trousers which were so comfortable. I stocked up on books to keep my mind occupied. I also suffered mouth ulcers the first week due to the chemo and bought a baby soft toothbrush and mild toothpaste plus some instead pastels. I stocked up with cranberry juice to help my bladder in case of cystitis which I got the first week. 

Wishing you all the very best Cl4r3. I'll be in a similar position next week. My first visit to the oncologist is on Tuesday and I'm like you, nervous but also just wanting to move forward. At least I'm now retired so I don't have to worry about trying to work while coping with the treatment. I have so much admiration for everyone on here coping with work and childcare throughout the treatment.

Thank you all so much for information and support.

Linda

Hi lindamae ,

Welcome to the Macmillan online community although I’m really sorry you’re having to go through this! 

I just want to wish you the very best of luck at your appointment on Tuesday & let you know we’re here if you need us even if you just feel like letting off a bit of stream to a bunch of people that know exactly where you’re coming from. 

Nicola 

Hello Lindamae

Ah, so sorry you find yourself here too, but a warm welcome to the group.  It is good that your first visit to the oncologist is in the pipeline as it really makes a huge difference knowing that your treatment is going to start very soon.  All the tips on here will help you too, but please ask the forum members at any time if you forget any of the information, your head will be going in circles at the moment.  And just if you need support or a chat, there is always a listening ear and most importantly, we have all been through it.

Irene xx

Cl4r3 & Lindamae

Best of luck with your treatments.  Some great info and advice from everyone.  One thing I did before treatment started was I went to my hairdresser and told her I wanted it shorter so I didn't have to heat treat it whenever I washed it and I wanted something that was just wash and go.  I had shoulder length bob at the time.  It was the best decision I made as I never had to worry about my hair on a daily basis and when washed it was dry within 10 minutes.  I lost some hair to thinning but didn't have patches and the new style did my hair so much good.  

Carole x