The on looker as a partner

Hi Floofy and welcome to the group although I’m sorry to hear of your partner’s diagnosis. By meeting his needs in terms of the practical side of things you are doing a lot already.  You say you feel helpless and scared of what to expect. Have you been able to go to any appointments to discuss the treatment& side effects etc? The mainstay of treatment is the radiotherapy and this will likely cause him pain when going to the toilet. Radiotherapy has a cumulative effect and the side effects do continue for a few weeks after the treatment. There are not usually many issues reported with the chemo, I just had a bit of nausea in week one but wasn’t actually sick. It’s important that any side effects are reported to his treating team as there are anti nausea drugs etc and creams to help with the effects of radiotherapy.  He is likely to be tired and emotionally drained, particularly towards the end of treatment. I would suggest perhaps sharing how you feel and asking if there is anything else you can do. Sometimes it’s enough to just listen to someone offloading. Make sure though that you also have someone to offload to. A cancer diagnosis doesn’t just affect the person diagnosed. Bev. 

Hi Floofy as well as this Group there is always the Family and Friends Forum on this site for support the following link will take you to it if you click on it. community.macmillan.org.uk/.../

Hi there Floofy,

Firstly welcome to the online community although I’m sorry you’ve had the need to find us. 

As someone that has been given this diagnosis & received similar treatment to your partner I can only give advice from the ‘patients’ prospective. I needed someone around to do exactly what you say you’re doing & that was to take care of day to day practicalities such as when the treatment fatigue kicked in & I needed to rest it was great to know I could just go to bed for an hour or so but my daughter & the dog would still be fed & watered etc. I can’t imagine how difficult it is when someone you love has this kind of diagnosis, it must be stressful. The treatment your partner will be having has accumulative side effects so he won’t all of a sudden be ill, the side effects are generally related to bowel disturbances & skin reactions but both of these happen fairly gradually & can be managed with medication & creams & he’ll probably get to week 3 or hopefully 4 before things start happening depending on the strength of radiotherapy. 

You’re more than welcome here of course, we can offer lots of practical advice & tips & we will continue to support yourself & your partner for as long as you need us but just in case you weren’t aware there is a group also for Family and friends - Discussion Forum if you needed a bit of support for yourself away from this group, although as I’ve said we’ll be more than happy to support you both throughout. If you fancy having a look at the other group just click on the link I’ve provided.

Please wish your partner good luck from me & you make sure you also look after yourself throughout his treatment as you’re important too. We’re always here if you have any questions please don’t hesitate to ask. 

Nicola 

Nicola thank you so much. For me it’s important I have the opportunity to contact those who have actually been through the diagnosis. It’s good to hear the things that may be on the horizon. To ask what items were helpful or not so helpful. Websites that are good to go to for helpful things like the best creams or gels etc. Knowing what’s potentially on the horizon and who and where to get help. And no after treatment yesterday and today he hasn’t come home with two heads! But I know there are stressful things to come. I’m so grateful to you for answering. It’s nice to know there are humans out there that can support. 

Thank you for this. Due to Covid I cannot go with him to the appointments but I have been able to have initial conference calls which has been helpful but now the process has started I feel somewhat isolated. Hubby says very little and that’s just how he is so it’s difficult to have conversations that are exploring on what happens and how he is. But your words have helped in giving me an idea of expectation so I’m grateful and thank you

Hi again Floofy, 

Long post ahead!!… With you not being able to attend your husbands treatment appointments with him I can give you a little insight into how mine went if that’s any help? I’m not sure how far your husband travels for treatment but my hospital was relatively close & it generally took longer getting to & from treatment than it did having it! I was asked to arrive 30 minutes before my appointment, once in the radiotherapy department I had to drink a measured amount of water & wait to be called in, I then went into a changing room which had an exit door into the radiotherapy room, once I’d taken my trousers off (underwear was kept on) I went through & got on the radiotherapy bed where I shimmied my undies down & they gave me a small covering for my modesty. The girls would line me up on the machine & away you go. It’s very short & painless  maybe 10 minutes in there & your done, back to the changing room, dressed & you’re done. I also saw my oncologist once a week for skin checks etc., & had a blood test each week to check I was ok continuing with the chemo too.

Regarding creams etc., your husbands radiotherapy team & oncologist will provide him with these & any pain relief he needs later on but he needs to tell them honestly how he’s doing. It would be useful also maybe to get some either Epsom salts or Dead Sea salts in, these are what I used in the bath throughout my treatment & especially when things began to get sore, they we’re definitely my go to & I was sometimes soaking in the bath 2 or 3 times a day once treatment was done & my skin reaction peaked, it was where I was most comfortable. Also maybe get some water wipes, these you can get by the baby wipes in the supermarket or Amazon do them too, wiping with toilet paper after using the loo can be a bit harsh once a skin reaction to the radiotherapy starts. Unusually I didn’t suffer diarrhoea as a lot of people seem to but I know those that have are given loperamide to control it so tell your husband just to speak to either the radiotherapy team or his oncologist if this happens & he’ll be given medication. 

Hopefully, as with most, your husbands reactions will be very gradual & along with his team you can deal with them as they arise. Also please don’t hesitate to ask should you have anymore questions no matter how personal they may seem we’re always here to help.

Nicola

Thank you Nicola this is really helpful. We live in Teddington and the treatment is at the Royal Marsden Sutton so it’s a daily taxi there and back for the 10 min radiotherapy. I don’t drive so this is our only safe option but that’s fine. I had not heard of water wipes so I must get these and also Epsom salts. He is on his 3rd session today and it all seems ok plus loads of oral meds. But I know as it progresses there will be discomfort and we have been told. Part of the problem is you are told about this at the beginning at the conference call but there was so much detail it was overwhelming even though I have worked in a job requiring attention to detail.

your messages have been very welcoming and it’s often easier to ask someone who has been through it to understand the experience of it rather than the clinical explanations that you also need. Thank you

Hi Floofy I haven’t started my treatment yet but I can guarantee you the ladies on here will put you and your partners mind at ease . They are my absolute hero’s ... every single one of them . Sending you love and lots of positive thoughts . Linzey X x x 

Hi Floofy, I buy Andrex flushable (biodegradable) wet wipes from Morrison & Waitrose etc, cheapest in a 3-pack box - & I make sure they’re unperfumed!

What I most wanted from friends & family was to be able to talk about cancer when I needed to, but often to talk & laugh about normal stuff to get away from feeling like a patient all the time.  There aren’t any rules to this game so you’ll need to take your cue from him, or ask if unsure - he may need to learn to communicate his needs better.

The daily taxi sounds expensive!  You may be able to get help with that, this link tells you who’s eligible...  Toni  x

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/benefits-and-financial-support/help-with-transport-and-parking

ps  don’t forget the Macmillan helpline - 7 days/week 8am-8pm: 0808 808 0000

I agree Floofy there is so much information in the beginning it really is overwhelming, it’s bad enough being bombarded with all of this information in a face to face consultation but by conference call it must be so much more difficult! 

The water wipes really are great, I still carry a couple with me in my bag (old habits & all that!) they have a high water content & don’t sting at all once the skin starts getting a bit sore. I never flushed them though, I’ve never even flushed the flushable ones to be honest! 

Is the taxi hospital transport? Hopefully so I wouldn’t like to think you’re having to pay for this! 

Nicola