[@Vik100]‍ 

a few tips now that I'm halfway through my Hodgkin's lymphoma treatment that I could suggest.

- now might be a good time to do a big cook up of a few things you can freeze for quick and easy meals when you have no energy. On my good days now I make a big thing of soup so I know it's got loads of veggies in and a Bolognese or chilli or stew just so I've got something in small easily defrost able portions when I have zero energy on my chemo weeks.

- arrange your room so that you've got everything easily accessible. For example we moved our bed away from the wall so that we could both have a bedside table. Also because I don't disturb my partner when  i'm up and down all night whereas before I was clambering over him to get out of bed.

- make sure you've got a bag of spare clothes and toiletries along with a list of medicines ready to go incase you need to go to the hospital. I was admitted after my first chemo after a couple of days because they hadn't got my nausea under control, I had no clue I was going to be admitted so went with nothing. Having a bag ready with clean clothes and toothbrushes and a charger is now a must for me as I was admitted a couple more times after that and it takes the strain off trying to get people to bring it in for you. Plus pack a book or a game or something you know how hospitals can be.

- download a symptom tracker. This will be super useful when you first start as symptoms are different for everyone. You will never know how you will personally react to chemo so having an app to track daybby day and hour by hour will help your medical team help you. E.g my nausea was horrendous at first but when I showed them just how frequently I was feeling sick they could see it was being particularly debilitating and prescibed me stronger meds. It's also a good way of tracking symptoms that usually get worse as chemo goes on, e..g fatigue and neuropathy.
 

- just be entirely honest with your medical team. You  will probably find the firsT couple of sessions to be the worst as they will be tweaking your medicines depending on how you react as everyone reacts differently. Just be entirely honest with how you feel and your symptoms. There are so many ways and meds they can give you to manage these so don't suffer on in silence!

- if your tastes start to go or you feel nauseous, don't eat your favourite meals. It sounds strange but you will end up associating it with chemo and I can't even face some of the food I used to love because I ate it when I felt rotten and now it's just a nasty reminder.

Just a few things off the top of my head.

I really hope it goes well for you and good luck.

We're here anytime.

Rose

Hello Rose

Thank you very much for the wealth of tips and advice. There are a lot of good practical things for us to get on with. Its good to have something practical as you feel a though you can contribute and make some progress. We had started bathc cooking but as the treatment hasnt yet started we seem to be eating it as quickly as we cook it lol ... I think bigger batches are called for.

Im realy sorry to hear anout your adverse symptoms but hope that the treatment is progressing well and that you start to feel better very soon.

Hugs

Vik

Thanks Joanie,

Im glad thats over. Although not really over yet as we she now has to face more scans as they dont have enough information to give a final recommendation. Not what I was expecting ... Found more reas of concern that they didntknow from the mamograms .... arrrghh youre right about the waiting. I thought the not knowing ended today and then the treatment got planned and done. It seems that thats not going to be the case :(

I guess at the end of the day getting it right is what matters but we have another two weeks at least now to wait to find out the treatment plan and the full diagnosis.

Well at least we can now plan Xmas as there is no way that treatment is going to happen before that lol

V x

Hello Again

I forgot to ask, as I was on my rant, how are you doing?

I hope all is going wel for you

Vik x

Hi Vik

im sorry your partner as to wait for further tests

you get to the point where you really don't think you can deal with any more waiting 

but the reality is you don't have a choice 

And it's hard 

try to keep busy 

I did try to think of the waiting days as bonus days as these were the days when I still didn't know what was ahead of me 

kind of don't worry until you need to 

I'm not sure it helped but again it's about controlling what you can control 

we had booked a 5 week long let in Spain before I had my routine mammogram 

god is laughing while you make plans 

my surgery date meant we could still have one week and as hard as it was we went for that week it was better than me mopping about the worry went with us but the family had a break 

it wasn't great but I got some sun and walked miles 

I'd make life as easy and as simple as you can for the next few weeks 

we are always here for some support 

take care of yourself as well as your partner 

joanie x

[@Vik100]‍ 

Re the point you raised about how to avoid immune issues, I personally wouldn't get too bothered as there's more than enough for you to worry about.  Its fair to say I've never been and never will be a domestic goddess whereas my partner wanted to regularly bleach the whole house top to bottom (and probably dip the cats in the same on a regular basis).  I do wash hands after touching the cats and before food prep and am a lot more mindful of use by dates on food (unlike my pre-cancer persona).

Up to you but what you may find is that if you do get immune issues and end up with high temp/neutropenic sepsis (you will need to be in A&E) you may well find that its caused by something unknown or that you couldn't have though to/practically have avoided.  And the worst thing you can do is to wrap your partner in cotton wool, fresh air is good (vs stale indoor air) in the low immunity period (ask when this is likely to be for your partner from breast care nurse as probably depends on their specific  treatment).

On this point really important to have a good thermometer (I found the best was an under armpit/tongue one as the expensive digital ear one was a waste of money and told me I was dead most of the time).

Good luck

Sam X

Thanks Joanie

I know what you mean. The good part is that we can now have a normalish Xmas. Maybe we will go away. The chances of tests on 17th followed by an not yet scheduled consultant appointment means surgery is highly unlikely to be before the new year. We can now think about accepting those invites we have had on hold for weeks.

I hope things are good with you ? Got plans for xmas?

Cheers

Vik x

Hi Vik 

yes make  the the best of the situation it's all you can do 

I hope your partner is managing the stress it use to come in waves for me 

we have my son and his partner and my granddaughter and her husband coming to stay next week for a pre Christmas dinner and gift exchange Wedsnesday TIL Sunday 
and then my son that lives local and his family will be here for Christmas lunch 

so I'm busy with shopping and cleaning 

I hope this forum has helped you a bit 

it's staggering how many of us have had breast cancer 

so many different experiences but the care is really good 

Joanie x