Another challenge... : Hello again, My previously... - LUPUS UK

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Another challenge...

whisperit profile image

Hello again,

My previously fit Mum was diagnosed yesterday with colon cancer. It appears to be quite advanced, and she is due to start chemo- and radio- therapy shortly. Then she will have surgery and a colostomy.

My Dad and I will be sharing the practical business of daily commutes to the hospital.

My main worry is for my parents, of course. If anyone has any tips for helping them through this process, I'd be grateful. But also, this is going to involve me with a level of activity that is way beyond anything I have managed in the past 18 months or so. Any thoughts on how to keep going with a succession of all-day round trips, enhancing stamina etc would also be welcome.

Ta

MX

31 Replies

So sorry to hear that - what age is she?

I don't know much about you and your own limitations - but seriously consider a small and portable mobility scooter to take out all the walking you will inevitably have to do in a hospital. They are designed for wheels!

I can only say that when I was in a similar position when my husband was dx'd with cancer, albeit 22 years ago so I was fit and well, everything else went by the board! I say everything else - I had 2 not-yet-teenage daughters and my MIL lived with us so I mean everything even remotely unnecessary! I had a very large deep freeze - and it was a life-saver. Batch cooking is not really more effort than cooking one meal but there are 3 or 4 meals waiting for you on other days. Most people have friends who say "can I help" and the offer of food is an easy one for most that they can understand. Some may even offer to act as a chauffeur - accept gratefully, once will help even if they then realise they can't do more.

But above all - do not feel you MUST visit/stay with her every day and for long periods. Hospital visiting hours are far too long and when people are poorly - they need rest. Even talking can be an effort. And YOU have to look after yourselves for when she is home and it falls on you to do things. Someone will bring the cup of tea in hospital!

What will the "all-day" sessions involve? It would be unusual for you to be able to sit with her during chemo. You should be entitled to patient transport door to door if she is up to it (it is usually a minibus type service), that is possibly the GP's job to arrange, or you may find volunteer drivers available. That saves the agony of finding and paying for hospital parking - so consider it. There may be a system at the hospital for regulars to get subsidised parking - ASK!!

If you aren't clear about what something involves at the hospital - ASK.

whisperit profile image
whisperit in reply to PMRpro

Thanks PMRpro,

Excellent thoughts there. Batch cooking is definitely something I will try, although having to live off a batch of my cooking may be the best way of losing weight since the zero calorie diet.

The "all day sessions" come about because she will be having both radio and chemo on a day patient basis. The hospital is nearly 2 hours away, so I am pretty much obliged to hang around the hospital, even if I'm not allowed to be at the bedside. Luckily, the Welsh Government prohibits parking charges in hospital car parks, so that is a worry I don't have.

Thanks again!

Mx

PMRpro profile image
PMRpro in reply to whisperit

Do ask about any help they can offer if that is the case. A 4 hour commute will be a lot for her too - do they have no boarding facilities for patients coming from a distance? Contact Macmillan who were very helpful for me and have access to all sorts of info.

How many sessions? Every day? For how long?

David commuted for his radiotherapy but that was only 20 mins and post op, he had had 9 sessions of chemo beforehand - but he couldn't have commuted for that! Every one was 5 or 6 days totally out of it. That was in the old days when they had enough beds for patients...

whisperit profile image
whisperit in reply to PMRpro

So far, all we know is that it will be 5 weeks of daily radiotherapy. The chemo is less certain - she is having further investigations of some probable liver metastases this week, when we will know more.

Luckily, the commute will be significantly less for her - I'm picking her up on the way, so to speak. But I will definitely look into volunteer drivers also, that might be a help for me and my Dad too x

Hello Mike

Oh Gosh...am vvvv much feeling for you & relating to this!

PMRpro's 🦉 reply is SPOT ON...nothing for me to add

Except perhaps something in my story can help:

My mother's rectum cancer was diagnosed in 2007 when she was a widow living on her own in her 80s. My fav sister lived v near ma, and was keeping her finances etc straight. They are both in Philadelphia USA. So my job was to donate any funds I could and to be at the end of the phone line for both ma & my sister. My sister & I also emailed loads. We discussed every detail of ma's diagnosis, treatment & care throughout this ordeal which culminated in ma going into residential care. I visited twice during this long drawn out time period....even though I was very poorly & disabled (without my underlying immune dysfunction recognised & in treatment)...somehow I managed to pull my weight in this teamwork...I often wonder how...and I think the main reason was that my husband was v supportive and my sister totally accepted my fragility.

So, my feeling is that teamwork is key to this...and you will manage, given the right support...and, for sure, all of us (your forum friends) are here for you!

Take care 🍀😘🍀😘🍀😘

Thank you coco, I knew there would be people here who had been there and done this - and better than I would!

I will try to follow your example....:)

X

Barnclown profile image
Barnclown in reply to whisperit

I can't help but feel you will manage...my sister wasn't all that well during ma's cancer experience + she had teenagers at school etc and her husband away a lot + a new rescue greyhound with abandonment issues 😏...she made the choice to loose ANY & ALL inhibitions about asking others for help...I was amazed at the way both her friends & our mother's friends stepped up...rotas were organised to drive ma to treatments etc...and, as if by magic, new acquaintances materialised just when needed...turning into friends through the process of volunteering help...incredible and vvvv moving...as well as humbling

🍀😘🍀😘🍀😘

PMRpro profile image
PMRpro in reply to Barnclown

Lucky lucky lady. I'm still bitter about how I was left to it. By even my brother and mother who lived in the city the hospital was in. When a friend did realise the state I was in after 6 months chemo and his surgery she said "But you seemed to be coping so well". She was a doctor...

Barnclown profile image
Barnclown in reply to PMRpro

Am dismayed! You are such a strong soul! I do wonder how I'd cope if Badger hits a Big Crisis....for sure I'd be here hoping for "good medicine" from forum to fuel my capacity to cope on my own...scary prospect....

PMRpro profile image
PMRpro in reply to Barnclown

I am now - partly because of all that. But I was physically shattered, it wasn't just the emotional stuff. But I ceased to exist, the GPs who had missed how ill he was, just handed out antibiotics and a steroid inhaler, actually told me to my face "But you weren't the patient..." Wrong - in cancer the entire family is the patient.

When I asked my mother why she hadn't come to visit my MIL to save me that bit at least she said "Oh, but I couldn't cope with seeing David so ill..." S%^" - how did she think I and the girls felt?

Barnclown profile image
Barnclown in reply to PMRpro

😤😤😤😤😤

PEOPLE 😱 can be vvvvv scary

🌷❤️🌷❤️🌷❤️

PMRpro profile image
PMRpro in reply to Barnclown

Can't they just!!!!!!

So very sorry to hear this whisper and I think coco and pro are spot on.

I can't offer much in the way of advice but I can say that you will cope. You just do, don't know how. It may even somehow make you feel a bit stronger in yourself as you'll be focusing more on your mum without much time to think about your own illness if that makes sense.

We are all here for you to help you through it and keep you strong.X

WELL SAID GG 🌟🌟🌟🌟🌟

Thank you georgiegirl, that is a really kind and encouraging thought.

(incidentally, today I also posted on a well-known cancer support charity's forum - and had no replies. That's not to criticise them at all, but it does go to show that this group is exceptional)

X

Can't add much to others' excellent responses Mike. Agree that it's best to ask for and accept any offer of help. big hug x

whisperit profile image
whisperit in reply to Lupiknits

Thank you, Lupiknits x

Oh dear, I'm sorry to hear about your mom. It could be rough on all of you.

Are there any other friends/familiy who can help you to drive? you need to take good care of yourself, find a pace you can hold for those 5 weeks ... if you are just going to hang around while she receives treatment maybe you can find a place to rest or get some sleep?

Adrenaline will arise naturally :)

And we all are here for you. Hugs!

whisperit profile image
whisperit in reply to 1sam

Thanks, 1sam,

There's not a lot of other options from family/friends, but I heard yesterday that weekends will be treatment-free! And I will definitely act on your idea of finding a restful place while I am at the hospital. Maybe I can take a hammock to sling between drip stands....

X

PMRpro profile image
PMRpro in reply to whisperit

Oh yes - forgot to say it will be Monday to Friday and if there are BH's they will also probably be free!

Dear whisperit,

I'm so sorry to hear about your mum. What a shock. You must be reeling. Do you have siblings living near enough to share the hospital trips?

I agree with everything that the wise ones on here have said: ask for and accept any and all offers of help. And PMRpro is right, Macmillan are great.

You're right to recognise that this is going to put a huge physical and an emotional strain on you. On the days you will be driving, once your mum is safely ensconced in the day unit, you could take the car to a quiet, shady spot and get some sleep. You could take a flask and something tasty to eat: if you're dehydrated and hungry, everything will seem much harder. I speak from experience, here!

Have your parents got friends living nearby and neighbours they get on with? Your dad may be a bit reticent about asking for help but generally, people are only too willing, once they understand the situation. Shopping, pharmacy trips, laundry, cooking meals; it may all be overwhelming for your dad if he's not previously had responsibility for these things (I know, I'm making a assumptions here) but your mum won't be up to much at all, for the duration.

And what about your own household? Is there someone who can take over if these tasks generally fall to you? And as for an evening meal, if you don't feel up to cooking on the days when you do the hospital trip, how about a delivery of ready cooked, frozen meals from a company like Wiltshire Farm Foods? I've not tried them but I see their delivery vans around.

I'm really feeling for you, whisper. You will cope, as Georgie girl says. With teamwork and making sure you look after yourself as well as your mum and dad, you'll get through this. Keep us posted.

Tess💞🍀🌈🍀

whisperit profile image
whisperit in reply to skylark15

That's a good thought about the car, actually. Not all that long ago, I used to drive up to Scotland for mountain walking and use the car to sleep in....it'll be like the old days, except the mountains I have to climb are a bit different now.

It is a shock, as you say - Mum went to the GP about 3 weeks ago about another issue and happened to mention in passing that she'd found a little blood...luckily, the GP said she'd have a quick look while she was there, and hey presto! Three weeks later, we are here, talking about colostomies and googling chemotherapy treatments....

You've also reminded me to get my skates on to sort out a couple of things here in my own home which are going to become a real hassle if this exhausts my time and energy for a while e.g. the blocked drain that I have to clear out every couple of days, and the dribbling tap! Definitely give a man/woman a ring today!

Thank you, Tess x

Hello whisper it

So sorry to read your news about your mum's diagnosis and now long plan for treatment!. That's going to be very tough on you all. Have you got friends and other family who could help to give you a break?. To help your health, you must take time out for you, sleep and relaxation strategies. If looking after someone else you have to think of yourself too in order to be able to effectively help them and keep it going!. Finally , you'll probably see in the hospital's chemo/ radiotherapy dept's info about Macmillan. They work closely to provide practical and emotional support for patients and their families at this difficult time!. They work closely with Citizens Advice as there are financial implications with a cancer diagnosis and know of all the help that there is available.

I do hope she copes with the treatment , must have been such a shock as she's been so well!. I hope the stress doesn't flare you and you cope as well as you can You've had a lot to deal with recently!.. Keep us posted as to how your both doing. Fingers tightly crossed. X

whisperit profile image
whisperit in reply to misty14

Thank you, misty. You've reminded me that I am actually open to the Occupational Therapy service atm, and am overdue an appointment. They might be very handy with advice in this situation....another one on my "To do" list for Monday!

I am hoping to get the Macmillan contacts soon, I'm sure they will be a great help

Mx

misty14 profile image
misty14 in reply to whisperit

Good luck with your to do list on Monday. Don't we collect lots todo when I'll!. I've coined a phrase 'fit to be ill'. I think it's very true. O T will be very helpful I'm sure, good timing!. All the best x

Hello

I was so sorry to read your post with the news of your mum's I'll health.

You've had great replies. You face a tough time but I'm sure you will all get through it, somehow. It's one of those situations where you have no choice.

I wish you well and please try to stay in touch here, even if we can only provide moral support.

Best wishes.

Wendy

whisperit profile image
whisperit in reply to Wendy39

Thanks. Yes, as you say, its not as if we have any choice. Meanwhile, we are starting a new family competition - who can be "invalid of the month"? After a year at the top, it looks like I may have to relinquish my crown. I am hoping to regain it soon, but hopefully because Mum gets better, rather than because I get worse! x

Wendy39 profile image
Wendy39 in reply to whisperit

That's the spirit! Got to laugh.......

Dear Whisperit,

I have just read about your dear mum's illness. I am so sorry to hear of her diagnosis & the treatments required. I remember a nurse once explaining all the medical issues & pre & post treatments to a more mature lady when she was being admitted to her ward & bed. 'OK now' she said, 'I hope that information is all clear enough for you'. The poor lady nodded & I saw the tears in her eyes. This lady reminded me of my granny & I was also aware of her despair, my eyes filled up. I held her hand & she smiled. We chatted & I as a much, much more junior student nurse explained the procedure in my much simpler talk. 'You do not need to talk she told me, I feel so much better knowing that you care'. She was right I did care very, very much. I think I am saying that the medics can be so professional that sometimes they forget to empathise with the patient & realise behind every diagnosis is a special human being and their family with many wants & needs. Dear, whisperit, both you & your mother have wants & needs. Please accept all the help you can get. MacMillan support is marvellous & can offer you advice even before hospital admission. As PMRpro said cancer is felt by the whole family. Please take as much care of yourself as you can. I am so glad your mum had a thorough GP. She also has you, someone who understand illness & its complications. Remember Whisperit, as Coco says your forum friends are here!

Peace, Love & Much Strength xx Pixiewixie

whisperit profile image
whisperit in reply to pixiewixie

Thank you for such a compassionate response, pixiewixie. It's the start of another part of the journey, I guess, and one she will need a lot of help with. Meanwhile, I'm so glad I have people like you to turn to here. M xxx

in reply to whisperit

Dear Mike. I can add nothing to these wonderful replies want to apologise for being so self absorbed today that I've come to this post of yours so late.

I have no equivalent experience really as no cancer - although shortly after my first son was born my mum was found to have a massive lump/ knot just above her bowel and she was in hospital in a very bad way for six weeks. I couldn't travel down for her because my new baby was too wee so I helped her and dad as best I could on the end of the phone.

She did recover finally though and I regret now that I wasnt able to be there for her as my dad was pretty hopeless and distraught.

Then I lost both my parents suddenly and rather prematurely and the responsibility fell on me to sort things out both times. Somehow I managed to cope with it all though and so will you I'm sure.

But please do look for every way possible to treat yourself to rests and TLC.

Everyone here has said amazing stuff as per usual. X

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