Bowel cancer CARERS, FAMILY & FRIENDS chat

Hi Scarlet, 

I'm so sorry to hear about your husband. It's good to ask for a second opinion. I feel like it's a bit of a postcode lottery, the level of NHS care we get depends on where you live. I'm lucky we have an excellent hospital, I know they did their best for my dad. 

Everyone's cancer journey is different, only those seeing a loved one go through it can really understand, that's why I'm so grateful for Macmillan. Give their helpline a call if you want to talk to someone, I've done it several times at the beginning of my dad's cancer journey. Everyone is so nice on this thread. 

Sorry if this feels like bad news to you, I don't mean to alarm you. Sadly my dad passed away last Tuesday. Remember, everyone is different. In my dad's case, his cancer was very advanced, he was only given weeks/months to live but he managed over one year, 16 months to be exact. The doctors were quite surprised he survived that long! I'm so grateful for the extra time, I really wished he had more time but unfortunately it's not something anyone can control. I've spent the past year in anticipatory grief, now that it's really happened, it feels unreal. What helps me is knowing I've done my best for my dad, I've spent my evenings and weekends with him, made him happy. I have a lot of good memories from the past year. He's no longer in pain and suffering, sigh I have to think like that to keep myself going. But I do believe he lives on in my heart.

Take a day at a time, hopefully the treatment will allow your husband to live for many more years to come. And remember to look after yourself, you need to have the energy to look after your husband. It's easy to neglect our self-care, I had to learn to manage my stress and anxiety levels. It really is an emotional roller-coaster! 

The information overload is a bit too much to process isn’t it? The oncologist wants to see us again in a week or two before starting the new chemo so I’m going to write down some questions. When I asked about immunotherapy he said it won’t work as the cancer my husband has is the one 96% of bowel cancer patients have and it only works on the other 4%. He has adenocarcinoma and my sister’s father in law has squamous cell bowel cancer so that is the rarer one I think. 

When we got the diagnoses in Nov the oncology nurse said due to his age they would throw the book at him in terms of treatment so it’s difficult to take in that they won’t consider radiotherapy etc. 

I’m sorry your husband didn’t get to come home and hope he was as peaceful as could be in the end. You are one brave lady xx

It’s so hard trying to disagree with the experts though isn’t it? I’m sure like me you aren’t medically trained so you trust what they say and believe they are doing what’s best. Please don’t ever think you’ve not done all you can, this journey is hard enough without carrying any guilt xx

Thank you for taking the time to reply at such a difficult time. I’m so sorry to hear you have lost your dad, I’m so scared for my two girls as they adore their dad and have been in tears all day. The father/daughter relationship is so precious but take comfort in knowing you made his last few months better. I’m sure he would want you to now focus on living as best a life as you can. 

If you don’t mind me asking, was your dad offered treatment at all? What a fighter to live so much longer than expected xx

Thanks for your kind words. I still try to post and support people going through a difficult time due to cancer cos everyone has been so nice to me on this forum over the past 16 months. Kindness makes the world a better place. Sometimes we feel so alone and helpless, it's nice to connect with others who understand so we feel less isolated. I hope your daughters are coping OK.

It's a bit of long story with my dad, I'll try to summarise it. We thought he had food poisoning but he wasn't getting any better after a couple of days, he ended going into A&E and the doctors thought he might not make it through the night, they diagnosed him with advanced bowel cancer. He had no symptoms before. We ended up visiting him after 1am in intensive care. He needed an emergency operation first thing in the morning. He needed a stoma, tumours removed from his intestines, had his spleen removed, the cancer had spread around his liver, peritonium, the doctors couldn't remove all of it. It was such a big operation, the chances of survival was slim and recovering from it didn't look promising. To cut a long story short, my dad is such a fighter, he was in intensive care for a month then a hospital ward for 2 months. Throughout that time, I had so many "this might be the end of life, he might not make it" conversation. The doctors were amazing and never gave up on him. When he was finally discharged, the doctors talked about weeks/months at best. My dad was so weak, bed bound with a catheter, kidney function wasn't 100%, had blood clots, low oxygen levels and blood pressure but surprisingly the doctor did refer him for palliative chemo. Even our GP talked about putting all the options on the table. In the end, my dad decided he didn't want to go for more hospital appointments, more tests, more risk. He had so many issues. Deep down, I thought even if he went to see the oncologist, he probably wasn't fit enough for further treatment and it might be too risky. Other family members were pushing for treatment, to just go to the see the oncologist, see what they say and throw anything and everything at it, hoping to extend my dad's life. In the end, he had the final say.. quality of life is more important, he hates going to the hospital. Later I found out from the palliative care nurse that palliative chemo is more for managing symptoms. My dad was home for 1 year, housebound, very weak, luckily he wasn't in any pain, he got a bit stronger physically but unfortunately last month his condition deteriorated, his cancer had spread to the lungs, bones and kidneys. He spent his last month in hospital and the doctors were trying so hard to balance his potassium levels before reaching the conclusion that no more could be done. The hospital's palliative care nurse was pushing back on all the extra tests the doctors wanted my dad to do. It was quality of life vs doctors trying their best to stabilise him. That's why I say I'm so lucky that my hospital doesn't give up on terminal patients, they try so hard to save my dad. I hope you have the same quality of care. 

I think it's a miracle my dad survived for so long cos his cancer journey was so challenging. On a positive note, my 91 year old grandma has a brain tumour, she was losing her eye sight, so we took her for tests and she was diagnosed with cancer, this was 4 years ago and she's doing fine. She's not receiving treatment cos of her advanced age. It just goes to show every cancer journey is different. All we can do is enjoy the present moment, make happy memories and hope for the best! 

Hi Everyone!

Well everyone who knows me here will know `my journey` through losing my husband Jay to bowel cancer just around 10 months ago and then two months after his passing having to go through it again with my older sister and her bowel cancer diagnosis. The outcome for her has been much better though an now and she is making a good recovery. Now my future daughter-in-law's mother is more or less in her final days. She has cancer but not sure what type we assume it's stomach cancer because there was a lump there possibly a tumour but at first they ruled out cancer and thought it was something else but was cancer all along and has just spread everywhere so they are doing now as they did with Jay and `making her comfortable` with pain relief etc.  My son's partner has taken sick leave from work just now which is not her because she never takes time off unless she has to so it is serious because she has to. One of her sisters who was in Australia has come home so that is how serious it is too. I'm just bracing myself for the `here we go again` situation although it's not directly affecting me this time although in a way it is as it's my son's future in-laws. William (my son) does not or feel he cannot go in to see his partner's mum as I think it's too triggering for him just after losing his dad but he takes Nicole (his partner) to hospital as she is there near enough everyday just now along with her other sisters and her dad they take it in turns so someone is always there. I am on standby incase I need to take my little granddaughter who I am having with me here today as William is working nightshift this week and needs his sleep between doing that and runnung Nicole to hospital and I just need to try to generally be there for them too and support as much as I can. I'm not looking on this as a `poor me` situation I just felt I needed to come on here and `vent` or write my thoughts down as I know this is a good place to come to in situations like this. I just pray that when and if- which is I think inevitable she won't be in a lot of pain and will pass peacefully. Take Care Everyone. 

Vicky xx

Hi Vicky Cancer does not give us a break it is everyone around us as well isn't it. Sorry for William to have to go through this again he must feel very angry inside first his dad auntie and mother in law. I am sure you are a great comfort to them and they will be grateful for your help looking after your granddaughter. We have at last got Simon a pet scan for 0745am in morning I sent 3 e-mails because he was told urgent needed it this week no reply so I found the secretary telephone number and rang and begged told her Simon has been in agony all night which he has and his markers are getting higher his surgeon said urgent she got him him very early and a hour drive but he will take anything. I am soo scared because the answers on in this pet scan I want to know but don't will let you know his team said to ring them when he has had it so they can chase it I won't stop fighting for him hugs to you xx

Thanks Jkee!

Yes just as I think I'm turning a corner I get blown right back again. Yes cancer is a `B` I'm sure I'm being `tested` from somewhere and my resilience can only last so long. I've just been so tired again this week but I feel for no apparent reason but I think at the back of my mind as I said I'm bracing myself for the worst again. Great they are finally going to see to Simon but so hard to read that his markers have risen again. You are in my thoughts and prayers as always and as the rest of you all. Take Care.

Vicky xx

Vicky and Jkee. You are in my prayers. This awful news for you vicky and Jkee.  Words are not enough and nothing I say will make you both feel better. Just come on here and vent. Les has gone to lay down as his fissure is worse as he has been taking paracetamol every 4 hours for the last few days. What a rollercoaster for all of us. 
thinking of you all. Maggie xx

Bless you Maggie x Yes hopefully one day we can all get off that rollecoaster think we've all had our money's worth riding it all these months. Good we can all be here for each other though and get what one another is going through. You too as all you ladies are in my thoughts and prayers. Take Care. 

Vicky xx