What to expect

Hi

Welcome to the forum . I had a wee read of your profile and you have had quite a time of it .

Just a couple of questions is the appointment with an oncologist or with the surgeon ? Sometimes complications occur when one condition affects the treatment of another . I am going to tag our friend stoatlord as he has practical experience in this area and might help you and your husband .

If it is with the oncologist they normally go through the staging of the Bowel tumour and what treatment options the MDT meeting has suggested . If they are looking at chemotherapy they will go through the first line treatment options . However if they think the risks outweigh the benefits they will not proceed with it .

Bowel cancer has many treatment options with chemotherapy so they maybe look at a different combination . 

Do you know your husband ‘s staging of the tumour ?

All the best with your appointment and glad you popped on . Others will be happy to share and answers any questions as you go along .

take care,

Court 

Hi Sausage roll, welcome to forum, just read your profile, wow you have been through it the last few months and your hubby too.

you already have experience of the Christie and will know they are a centre of excellence.

although I can't tell you what to expect, what I can say is that when my husband went there in April, he was first seen in dept 22 a lovely new out patients department, very bright warm and welcoming.  My husband had been referred there for radiotherapy and chemo. For just five weeks. He has now been referred back to local hospital so everyone's experiencing may be different I suspect. 

I am sure they will look after you well.

Good luck with your meeting today,and let us know how you get on, my best wishes to you x

.

Hi Tracy. First of all I’m sending you a big hug because you’ve had a horrible few months haven’t you?

Not sure what your hubby’s had in the way of scans so far so I’ll just offer you some generic advice if that’s ok?

2 pairs of ears is better than 1 and take a pen and paper to jot down any questions you may have or some notes. I’ve heard of people downloading recording apps onto their phones but you’d have to check that the consultant would be happy with that.

Stay away from google - the information is out of date and downright scary in places - stay on here or the bowel Cancer uk Board. I’ve also attached a booklet which may give you an idea of what to expect in terms of treatment

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourPathway_BowelCancerUK.pdf

You will feel like a rabbit caught in the headlights initially - things will feel a bit better once there is a treatment plan in place but concentrate on one stage at a time.

Christie’s and Basingstoke are the 2 top hospitals in the country for cancer treatment so your hubby will be in the best hands.

Cancer will take over both your lives for the next year but remember to look after yourself - the focus will obviously be on your hubby but you need to look after yourself as well as the support of loved ones is so important - try to find some ‘you’ time amongst the appointments and treatments.

And lastly keep us posted - we’ve all been in your shoes and sometimes you just need to talk to people who’ve been through this.

Take care

Karen x

Hi Tracy 

What a story you have to tell a lifetime of jumping from one family members health problem to another.

I should of course welcome you to the online community although I know down deep that you wish you never had to come and join us and I apologise for not welcoming you earlier but I do hope that you find being a member of the community will be of help to you and I see that court and process have been in touch all ready.

What to expect at the appointment basically someone from the medical team looking after your husband will talk at you, at any time you are being spoken to don't be afraid to say STOP I don't understand please repeat in simple language so we know exactly what's involved and it is important that you are fully aware of what's going to happen in the future.

Also take sheets of paper or a notebook and a few pens and takes notes, it's amazing how many people sit in their cars or in the hospital cafe after the appointment all asking the same question, what did say about this,  what's going to happen etc and coming up with I don't know but you armed with your notebook and pens will have your notes to fall back on. Don't be afraid to ask questions even if you think it stupid or small ask it anyway and get the answer.

Some consultants don't mind you recording the appointment on your smartphone, but ask him first telling him it's only for reference when you get home and nothing else.

After the appointment and you get back home if you've still got questions come on here and ask us anything and we'll to try and give you an answer if we don't have the answer don't despair we have a team of very friendly specialist nurse who you can contact on their Ask a Nurse page and they'll get back to you normally within two days but that's not all, want to speak to a nurse one to one all you have to do is phone this number 0808 808 0000 and ask to speak to a nurse then you can ask your questions in confidence

I hope the appointment goes well, please keep in touch and let us know how it went.

Best wishes to you both

Ian

Sorry I've duplicated much the same as you but I suppose getting the same message over a few times is better than not getting any and it doesn't help that everyone types faster than me!

Wow, you really have been through an ordeal! You have my utmost sympathy!

As mentioned above by the ever-lovely Court, I have some experience of how treating one condition can impact another, as I myself have a wide variety of unfortunate medical conditions. The specific problems that are impacting your husband are not ones I really know much about, as I have never experienced the issues he has with his spine and heart myself. However, I can give a little account of some of my own experiences as a multi-illness cancer patient.

I think the exact staging of his cancer will obviously be a major factor in what options are left open for treatment. Surgery and chemotherapy are probably on the list as cancer treatments, but when and how they are administered is indeed going to depend very much on how he is progressing on the antibiotics. In my case, I started on chemo, and then contracted a very nasty respiratory infection. I went to the local hospital (as advised to do while on chemo) and was put onto antibiotics. This was not a good thing at all, as they did indeed react very badly with my chemotherapy treatment, and I ended up back in hospital a few days later. I was taken off both treatments, and was put onto intravenous antibiotics for a week or so. This did the job and removed the infection, fortunately, but I was not allowed back onto chemo as I had reacted so badly.

So, it may well be that chemo is not on the cards at first. The medical people are right - the infection is undoubtedly the more immediate concern, but it may well be that it can be resolved successfully with the antibiotics. Putting someone onto chemo when they have an infection is not going to be high on the list of eventual outcomes. Infection with chemotherapy is a huge risk factor, and believe me, not somewhere you want to go. On the other hand, if the infection is eventually resolved, it may well be safe enough to go down the chemo route at that point, so while they might not want to risk it at first, do not lose hope. A treatment plan is a flexible thing, and while one treatment is not viable today, this does not rule it out for a month's time, for example.

I'm not a doctor or nurse, and I cannot really give any insight onto how surgery, radiotherapy, chemotherapy etc. will react with your husband's other medical conditions. You should get some advice from your surgeon/oncologist and their teams about this, and if it is not given, then DO ask them about it.

One thing I do know about, though, is life following open heart surgery for valve replacement. My older brother (himself a doctor who worked as a bowel cancer surgeon) has himself had the self same operation that your husband seems to have had for valve repair. It did change his life, of course, but he has gone on to get back on top of his life. Obviously, he did not have to deal with the infection or cancer, but from the point of view of his heart, it did give him a new lease of life, so I hope the same will be true for your husband.

I think the combination of conditions is a huge burden for you  both to be carrying at this time, but it is worth considering that they are all issues that can (and hopefully, will) be defeated. The infection will be sorted out by the antibiotics. His heart will heal up given time. And bowel cancer, for all it is a very scary thing to be diagnosed with, is a condition that is very treatable, and there are any number of stories on this forum that will show that people do get back their lives, with the cancer effectively beaten! You're under enormous pressure right now, and it can be tempting to see little way out of this maze. But there is a path out, and your medical team will have the map, hopefully.

I wish you both the very best. It is a huge thing to have to deal with all in one go, no doubt, but trust your doctors. I really hope they are able to give you some positive input, and that your husband is able to get back on his feet again, with all these medical woes thoroughly defeated!

Robin.

Unsure if I’m replying to the members who advised me but here goes .. we went to Christie’s with Steve on Tuesday 30-07-19  and they explained everything from the easiest option to the worse scenario, made us both feel at ease , they scheduled hubbys  radiotherapy for Friday 2-08-19 to begin but unfortunately yesterday he went for a ECG a follow up appointment regarding his new heart valves  he had fitted a few weeks ago, only to be kept in as they were not working properly and it looks like  he  has  a blood clot on his heart , so therefore his radiotherapy had to be cancelled due to this set back .. why do things happen to good hard working people ? Will this nightmare ever end ? 

Oh that’s such a disappointing visit but hope they get him sorted quickly . So glad they spotted that blood clot and will get onto dispersing it . 

They will get this sorted and get him back along to his treatment but the delay is frustrating and the whole thing emotionally draining. It does feel as those is throwing up layers of obstacles for you both . But we are here for you and will continue to be here until this news starts to get better .

Take special care,

Court 

Hubby is currently  on a drip having heparin and warfarin directly into his arm .. once the clot has gone he can come home in a few days , he’s having the camera down on Monday to see what’s what , they’ve also started him on more iv antibiotics via his pip line  , as soon as this clot has gone he can start his radiotherapy.. thank you for making me feel not so  isolated as I think a lot of people feel that ,once they are going through tough times especially cancer x 

Hi ,

I am so glad you feel less isolated . It can be so frightening seeing someone you love suddenly needing intervention. Although it does sound as though it was for the best !!!

They will have him back on his feet and starting treatment before you know it . 

I hope your able to grab a few minutes to take care of yourself for a bit . 

Take care ,

Court