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Advice needed please

13 Jun 2018 02:31

Hello All

My husband has been diagnosed with salivary gland cancer, it started four months ago as a pimple on his cheek and now is larger than a tennis ball, he has two ulcerated tumours that are bleeding and infected still three weeks after they burst.

We are going to the hospital this Thursday to see the maxillofacial surgeon who will tell us the next step for treatment. We are both scared and so worried about what they will say.

Does anyone know what we might expect when we go please?

My family were very supportive when I first told them but now I hardly get a phone call and they never ask about how we are they just want to talk about themselves. On top of being so depressed this isn’t helping and now I don’t want to tell them anything about what is happening and when we talk I just pretend everything is fine. Any advice please?

Thanks for listening Victoria

Re: Advice needed please

13 Jun 2018 08:36 in response to Victoria15

Hi there .. so sorry to hear what your going through, that sure sounds a painfull tough journey your both on ..

As for families that are not even asking how you are or offering a shoulder to lean on... if I were you I'd embrace those who care and ignore the ones that don't ... you sure find out who your friends are when we get cancer ... I had amazing support, but a couple of people I held dear, there was not even a text .. didn't want huge gestures, just a text saying thinking of you ... so now I've moved on without them ... 

You have each other, you'll be stronger because of that ... l for one, are sending you both caring thoughts and hope you get a good result .. I'm sorry I can't answer your question ... I would ring the nurses on here or McMillan free phone, as I'm sure they could help or tell you where to find those answers ...

Sending you both a vertual hug ... Chrissie x

Re: Advice needed please

13 Jun 2018 14:49 in response to Chriss

Hi Chrissie

Thank you so much for your reply and advice. You are right the people that are there for you are the people that you should keep around after.

I hope your journey is going well and take care Victoria x

Re: Advice needed please

13 Jun 2018 16:43 in response to Victoria15

Hi,

When my husband was diagnosed we had very mixed responses from close relatives and friends. Even in this day and age it seems that some people just cannot cope with hearing about such news and do not know how to behave around those who are ill (whether cancer related or not). As my hubby did not want to talk about it either I found the forum very supportive. I did keep lines of communication open albeit in a limited way for those who showed little interest but in the longer term we appreciated the close friends and family who were able to offer their support.

All the best with your husband's consultation tomorrow and I am sure you have lots of questions. I found it helpful to write all my concerns down to take with us and even jotted notes down of the replies which helped make things clearer later as it can be a lot to take in when you are tired, stressed and understandably worried.  Jules54

Re: Advice needed please

14 Jun 2018 08:04 in response to Victoria15

Victoria

welcome to the forum and sorry to hear about your husband

i am now nearly 4 years post treatment for a head and neck cancer and doing ok

i remember when I went public with my diagnosis two weeks bofore I started treatment, the treatment I got from close friends was mixed.

im going to say that I was most probably the healthiest bloke in my village, I ate sensibly, was not over weight and played a few sports, not bad for a 52 year old when I was diagnosed.

my treatment took me 6 months out of any social interaction and during that time three responses from our friends were as follows:

1. Some stepped up and were a godsend and to this day I will always be indebted to them helping me and my family through it.

2. A lot of my male sports friends went missing. I think this was dues to many things

a. Being the fittest bloke in the village and suddenly having cancer made them question their own mortality and for some their wives put them on enforced diets

b.  Generally blokes don’t deal with this sort of thing and just don’t know what to say, so just dont

3. Some friends that I would not grade a close, suddenly come to the party

4. I generally thought though that a lot of people avoided me just in case they would catch something, I did not really believe this but this is how they made me feel

5. Unless you have dealt with cancer, people are uneducated about cancer and link it to death. People then find this difficult to deal with. In reality you have become educated about your cancer and are now facing the impact of treatment .... ignorance will always prevail though

dont be so hard on yourself about these people, you have the advantage of being forced to understand what you are now dealing with, all your friends have the choice and have the luxury of switching off to you .... there is no off button luxury for you.

at times like this you just have to look after yourself and immediate family and everyone else .... just does whatever they are going to do

im sure many people on here have similar stories, so you are not alone in this aspect

let us know how you all get on and come back and chat anytime you feel the need ... with anything you want to talk or sound off about

vatch

Re: Advice needed please

14 Jun 2018 13:37 in response to jules54

Hi Jules

Thank you so much for your reply and putting it into respective, I have decided to go with the flow and who wants to support us that's fine and the people that don't I will respect they are not able to cope with this and just see what happens. I cannot lose any more sleep than I have already.

As you know we went to the hospital today for what we were expecting the next stage of my husband's treatment, we arrived early because we just couldn't wait. The doctor was very nice and said they were still waiting for one more result and until then we had to wait another week to come back and see them. This started four months ago so you can just imagine I was in tears and left my husband waiting for the printout for next weeks appointment. The doctor also said they think my husband will have to go to another hospital an hour's drive away because of his cancer being rare and they don't think the doctors there will be able to do the operation. I have calmed down now and all our hopes that today we were going to be told something were squashed. I am still feeling helpless and tearful and just hope that they will have the last test result so they can start the treatment. My husbands tumour is growing daily and we hope because of this wait it isn't growing to other area's.

Thank you again for your reply and I hope you are keeping well Victoria

Re: Advice needed please

14 Jun 2018 13:43 in response to Vatch

Hi Vatch

Thank you so much for your reply I am so sorry you had to go through what you did but happy that you are well. That gives me hope for my husband.

I guess you are right not everyone knows about cancer and some people just cannot cope and don't always know what to say. I only want people to phone and say how are you both, I normally just spend a couple of minutes updating them and then I spend the rest of the time talking about their days, that is because I don't have anything to talk about and I enjoy forgetting about my problems and think yes one day we can do that so it isn't like I want people to call and spend the whole conversation about us. I will have to except that sometimes you lose people you didn't think you would and people that you thought would never be there for you step up. At the end of the day we have a huge journey ahead of us and I can't be negative and worry about the small things.

As you know we went to the hospital today for what we were expecting the next stage of my husband's treatment, we arrived early because we just couldn't wait. The doctor was very nice and said they were still waiting for one more result and until then we had to wait another week to come back and see them. This started four months ago so you can just imagine I was in tears and left my husband waiting for the printout for next weeks appointment. The doctor also said they think my husband will have to go to another hospital an hour's drive away because of his cancer being rare and they don't think the doctors there will be able to do the operation. I have calmed down now and all our hopes that today we were going to be told something were squashed. I am still feeling helpless and tearful and just hope that they will have the last test result so they can start the treatment. My husbands tumour is growing daily and we hope because of this wait it isn't growing to other area's.

Thank you again for your reply and I hope you continue to keep well Victoria

Re: Advice needed please

14 Jun 2018 15:31 in response to Victoria15

Hi Victoria

So frustrating that you had a wasted journey to the hospital today and I too remember our getting there well before appointment  times because it felt we were at least doing something.  Hopefully the one remaining result will be through before the new appointment so that the forward treatment plan can begin in earnest. (perhaps a sneaky phone call the day before the appointment might be worthwhile to save another fruitless journey). It does seem as though it is up to the patient/carer to 'think on their feet' and so I merely suggest this with the benefit of hindsight during my husband's palliative care.  May also be worth looking into where your husband's treatment may ultimately take place if this should become necessry (you may have already done this!)  .  I have to say the only way I kept 'sane' during my husband's journey throughout was by keeping busy but often shed tears at the frustration of all it entailed.  If your husband has been allocated a MacMillan nurse then you can bend their ears too with any questions you may have.

My own husband's cancer was not particularly rare(Mesothelioma) so his care was managed locally so we were lucky in this respect.

Will keep my fingers crossed that your next appointment will give you both better insight to the treatment plans.  The forum is always 'open' so you can sound off anytime you need.  It's hard but do remember to look after yourself too; the watching and waiting period is pretty stressful.  Jules

Re: Advice needed please

15 Jun 2018 07:40 in response to Victoria15

Victoria

although it’s your partner that has cancer, the impact of that will infect you ..... it’s the only thing that you deal with and you talk about, although you will do other things, cooking, washing, etc ... these things are done on automatic mode and just blur into the background of what you know do.

I was conscious of my wife not loosing her identity as conversations became all about me and me cancer and my wife would just end up playing the reporter role.

in reality I had the easy part, I just had to go through the treatment and everybody focused and helped me do that, but who was helping my wife deal with what she was going through and how she was dealing with seeing what I was going through?

For this reason I wrote a blog all the way through my treatment and this updated everyone we knew and saved my wife saying the same thing 100 times over. Having updated everyone, when my wife met our friends, there would be a general conversation about me, but there was then space for them to ask my wife “how are you?”

the whole process of treatment is draining, I had 30 daily sessions of Tomotherapy over a period of 6 weeks and was fortunate to have good friends that helped transport me back and forth for a 45 minute each way journey to the hospital. This just gave my wife a bit of time out and enabled her to have a bit of me time.

i am sure your will do everything in your power to help your partner through this process, but don’t forget about you. You are no good to you or your partner if you drain your physical and mental batteries .... And I think it’s impotant that you don’t lose your identity in the process, it’s very easy for you to be forgotten here when everything is focused on your partner.

cancer may infect a loved one, but mentally it infects all those very close and sometimes this is missed.

thank you for the kind words about my circumstance, but to be honest, once I was diagnosed, it was ok what do I need to do to survive this and you just have to do it.

shout, sound off and come and talk to us about you (and your partner) whenever you want, there is always someone on here to listen to you.

vatch

Re: Advice needed please

15 Jun 2018 08:25 in response to Victoria15

Hi again Victoria

So glad Vatch has responded and offers the thoughts of a cancer survivor having in reality been there and done that (hi Vatch).  Have to say he summed up 'my role' as reporter so clearly that he bought tears to my eyes as I remembered back.  I have to say our situation was a lot different as my husband did not and could not handle the emotional side of talking about his illness and so I  I willingly become the other half who kept others in the loop.  This is why the forum was a good outlet for me and there are many threads here which offer  inspiration and release for the daily stresses that diagnosis/treatment can bring.  I even bore people with chat at times( I love talking about my garden birds) but they were so understanding and the hints and tips went a long way to making our joint journey easier. My husband was also pleased I had somewhere to 'virtually run and hide'.

Look after each other and remember your own wellbeing along the way. Regards  Jules

Re: Advice needed please

15 Jun 2018 19:13 in response to Vatch

Hi Vatch

Thank you so much for your reply. It also reminded me of when my husband first had cancer five years ago. (I forgot to mention this is his and our second time with cancer) My husband didn't really want to talk about it so as we both worked together at the time for a large Oil & Gas company I had to update everyone which was exhausting keeping everything together and still working. This time we are both retired but as I am older I feel very drained. I also have a 39 year old son  at home who has arthritis through his whole body and is in bed for 22 hours a day. My husband also had a new knee eight weeks ago so it has been really hard especially being told he has a rare cancer that might not be able to treat in our local hospital and we would have to travel an hour away which for many people that isn't an issue for me motorways scare the life out of me on my own. My son said he would come with me but as I said he is very ill and cannot walk very well.

What worries me the most is every day nothing is being done the tumour is growing larger and it might grow into another area and they might not be able to save him. That scares me because my husband is my life and I don't think I could do it on my own. I know I am not on my own I have my son who lives with us. Can I have the strength to do it?

I am praying this won't be the case and I will come on here and tell you they have saved his life and we will have a few more years together.

Thank you so much for your reply I thought about not coming back on here because who wants to listen to some moaning person then I read yours and Jules reply and knew that there are people out there that do care. Take care Victoria

Re: Advice needed please

15 Jun 2018 19:23 in response to jules54

Hi Jules

Thank you again for your reply if you could please read my reply to Vatch I have opened up a bit more and explained a bit more of my feelings and what is going on in my life.

Today I took a friend to her hospital appoinment which to be honest I didn't want to because I am so fed up with them especially as I felt so let down yesterday, but I did because I don't like to let people down. It was good really because I told her how guilty I felt yesterday for being so tearful and fed up with my life and she was really supportive and understanding and suggested that once a week we go out shopping for a couple of hours so I can forget about everything which I said I would. Well as long as my husband is well enough.

Today was another day and we both woke up grateful that we had each other. If we have to wait because they want to give my husband the best chance of life and if it takes a few weeks longer than that's what it is. 

Thanks again Jules 

Victoria

Re: Advice needed please

16 Jun 2018 08:05 in response to Victoria15

Hi Victoria

Having read your replies to Vatch (and me) it showed me just how much strength you have, not only now but over the years.  This does not take away the fact that whilst we 'manage' we can also hurt greatly and the emotional rollercoaster is a difficult one.  Helping others when you could do with your own support brought its own rewards when you were able to open up to your friend too.  Sometimes it is easier just to say it how it is and then the understanding comes along. Easier said than done sometimes especially as we travel an uncertain journey.  I learned a helluva lot about myself during hubby's illness (did not like myself much at times either as felt I should cope better but anger and frustration played its part).  The best advice I was given on the forum was to take things in 'baby steps' and be thankful for each day and I definitely tried!

Hope you have a peaceful weekend.Jules

Re: Advice needed please

16 Jun 2018 10:27 in response to jules54

Jules 

Thanks for you kind words on my reply, I always thought I had the easy part to play in my cancer ... I just had to do it and everyone helped me do it, specially my wife, but I was conscious of the fact that my cancer was about her too, and I did not want her not to be supported through the treatment process.

watching your loved one go through this process, trying to deal with that, feeling useless, because you can’t fix it, but then having to take up both roles in the family, run the whole house and then find some strength to support a loved one .... to then have every external conversation dominated by cancer is exhausting

i had it easy

i take my hat off to both of you

Victoria

friends are a strange breed sometimes 

however as jules says, this is the time to be honest with yourself an those around you. You know you will have very little reserves going through this and trying to deal with your friends is it the bottom of you pile of things to deal with .... if they are good friends, after a while they will get the message and pull their weight....as Jude’s says an honest word in their ear Igor help spark them into action

im sorry to hear about your son, this obviously just adds to you superwoman status, but remember, you are not Wonder Woman, only human like the rest of us, and our bodies have a way of saying “ right thats enough, you are expecting too much of me ... I’m shutting down for a while and will be back soon” ..... so look after yourself a bit and don’t be scared sk for help.

I was fortunate to have some good friends that took me on my daily 1.5 hr round trips, leaving my wife at home for some me time or getting stuff done whilst I was not there takingup her very. Time.

if you have friends like this and who can do this, take up the favour and don’t feel bad for not being at each session.

my thoughts and best wishes go out to you both

keep us informers as to how ou are both getting on

vatch

Re: Advice needed please

18 Jun 2018 07:48 in response to Vatch

Bless you Vatch, I am sure your cancer diagnosis/treatment was anything but easy but have great respect for your point of view and outlook.  Having been on the other side of the fence as a supporting wife/carer the over-riding frustration (guilty feelings) were obviously due to my having no control as to the affect I could make in the outcome. It took a period of adjustment to understand my role and that of our support network in my husband's illness. Hey ho hindsight is a wonderful thing in all walks of life but my husband's personality was such that he 'prepared us all' by shutting us out of his emotions.  I was extremely lucky that his medical team throughout (with his consent of course) kept me in the loopand my virtual supporters on this forum let me 'sound off' when it all become a bit too much to bear.

I am pleased to say that the support network (those who chose to travel the road with us) made things manageable for us both though, of course, at the times it felt overwhelming.

Sending good wishes for today and onwards.  Jules