Newly Diagnosed

[Proud Wife]

Hi Elaine

I sent a message to you this morning so ignore it, I've just read your update.

I think Pete could be feeling very worried, anxious, insecure etc and who can blame to most strongest of men for feeling that way after receiving a PC diagnosis.

I'm thinking that if he's constantly looking at you or looking at your whilst answering, he's just seeking reassurance (especially when talking to other people). And in particular, when you find him looking at you, he's probably just taking stock of his life. If I were you, when you find him staring, just go up to him and give him a hug, even if it's out of character for you, I'm just sure it's because he doesn't want to leave you and of course the rest of the family.

My hubby did that, especially when we were at oncologist meetings, he'd look at me as though to ask, is what I'm saying right... Although you might have been independent, something like this brings you closer or makes you want to be more dependent on your other half.

And finally, you are bloody entitled to have a wobble my darling. I'm going out now for a few hours but feel free to message me later for a chat privately if that would help xx

[Justamo]

You're allowed to have a wobble Elaine, and this is the place to have it.

For a while I had to attend every appointment with Peter because he just wouldn't answer questions, or else he said the first thing that came into his head. Even now if his GP asks him something he looks at me to answer for him. He is a bit better with the oncologist because Dr Feelgood is big and boomy and uses eccentric language and he makes Peter laugh. And the nurses at the MacMillan unit are great and put up with his flirting and answer him back.

Like you, I think it's no bad thing for him to miss a dose of chemo. It will give his poor body a chance to rebuild itself a little after all the toxic waste which is being pumped into it. Peter is only taking Gemcitibine which is not causing much in the way of side effects. He had chemo yesterday so will be bedridden and miserable on Saturday I should think.

I asked the nurses on the support line to pass my email address to you so get in touch any time you like.

Take care, Love Mo

[Dandygal76]

Hey Elaine, I get the mints.. my dad went on sherbet lemons and fruity sweets. The taste sensation is fried around all of this. Also, I get the looking at you and they do say there is 'chemo brain' but I also go with the hug and a good talk. Sometimes they try to stay too strong for us and what PW said about reflecting on his life also resonates. I would ask him and have a chat about it if you can. I think I have learned they know more what is going on with their bodies and way before the medics do (and way before they tell us). As I said, it could be chemo brain but try and talk it out rather than worry. Your instinct is saying something is different and you need to ride that wave. I hope my advice is okay. All our advice is tainted by our own experiences and you own your path on this and they are all different. x

[Guest]

Hi Elaine,

Lots of good advice on previous posts as always. Yes, they do know more about how they feel than anyone because it's their body and like all of us they can't or don't want to put into words what they are feeling. These are the men we choose, men with true grit who get on with whatever life throws at them with stoicism. Having recovered from the diagnosis we then seem to go into test and treatment mode as if the "life limiting" conclusion is secondary. Then we start with the diet and eating worries, then the chemo worries, then the test worries, marker worries, platelet worries, scan worries, nausea worries etc all of which give us something, anything to focus on rather than the grim reality. We do this with varying levels of success. You are not alone and you can have as many wobbles as you like on here, every one of us will understand.

The routines by which we have lived together also change, it's another thing that disorientates us and contributes to our anxieties. Routine can be very comforting and I think it does comfort the patient to try an keep things as normal as they can be. Pete is bound to be more reflective than before. He will have all the worries that you have but will not want to talk about them because men like this don't, many can't. I agree with hugs and cuddles. Have as many of them as you and he want, human touch is hugely important and doesn't always need to be accompanied by words. You both need reassurance. xxxx

[Elaine123]

Hi everyone and thank you for the lovely full of advice posts they have fairly picked me up. Veebee thank you for asking after Pete , we had a load of visitors at the weekend ...too many in fact... I am not being ungrateful but Pete tired even listening to everyone. He doesn't socialite too well these days. His feet are still swollen and still the odd nosebleed due to the low platelets.

Leigha it is lovely to see you back on the forum again and thank you for the post.....it will be difficult having to return to your normal daily routine and workplace again as like everyone on here your whole routine and your life took on different priorities whilst caring for your Dad. I hope your mum is keeping well although she will still be very raw after the past three weeks. There is still no words that I can say that will convey my thoughts to you that haven't already been said. So I will just say thank you for posting and think of you and your Dads journey often.

It's a beautiful spring day here and I was out tidying up in the garden and for that hour I felt normal again , I had not realised just how different our life has become in three short months. You are so right Marmalade we constantly focus on the effects of their PC and blinker the grim reality. Maybe that's the easiest way to deal with it all or it may not be. Whatever is the best way I feel that our whole life now changes in seconds according to how Pete is at any given time.

Thank you again for all your welcome advice I wouldn't manage without it. Take care everyone.

Elaine

X

[Veebee]

Hello Elaine...good to hear things are as ok as they can be. We've had visitors on Saturday, Sunday and today. Allan doesn't have much to say to them either. The friends who came today have been travelling round Europe in their motor home and told some interesting tales but Allan wasn't following the conversation and seems to "zone out". He's definitely more comfortable with just us two.

Chin up and carry on xx

[Elaine123]

Hi Veebee it must be a symptom of PC if Allen has the same reaction to other people. I just feel everyone is being so kind and so supportive of Pete and I and sometimes feel quite annoyed at the way he ignores people. As soon as they leave he reverts right back into his normal behaviour. I know that we cannot put ourselves inside there head and feel their emotions but sometimes I just get a glimpse of Pete when others are around and it's as though he is withdrawing from the normality of daily life as though that is no longer part of his world and then when it is just the two of us he doesn't really have to keep up pretences. I don't know if that makes sense I cannot fully explain it. He drives me down to the town for shopping etc but he stays in the car while I go in places and do what I have to do at first I thought this was because he didn't feel fit enough to trail round supermarkets etc but as time goes on I feel this is another instance of this withdrawal from familiar life as we know it.

Pete lost last weeks chemo and that's him now on his free week so I am hoping he can feel a bit stronger as the days go on.

He got a letter with an appointment to speak to a clinical psychologist at the cancer unit and there was a checklist he had to complete about things that were worrying him such as personal care ..shopping ..keeping in touch with family ...how his diagnosis is affecting his thoughts..fear..pain ..fatigue ..and end of life. He phoned up and cancelled it as he said he knows the outcome of this and doesn't need anyone to tell him and he quite down all day after that. Oh Veebee the trials and tribulations of PC it is a new thing every day eh. Petes sister is coming down today and we are going to the garden centre for lunch at the moment he is going to come but it's not 1pm yet so fingers crossed. It has been lovely sunny weather here the past two days so need to make a proper start in the garden which I love. Hope I haven't depressed you too much lol. Hope Allen is having a good week .....hugs

Elaine

X

[Veebee]

Hi Elaine...I really hope that Pete will be able to have next week's chemo. It will give him hope and maybe this is what's playing on his mind. I feel as if Allan spends all his time concentrating on himself. .. do you understand what I mean? He's gone "inwards". Pete may feel as if he doesn't want interference from another party, regarding the psychologist. I know that Allan wouldn't want it either. Maybe it's because they're both relatively young and, if Pete's like Allan and has always been an independent, private person, then he may feel as if he doesn't want to open up to a stranger. For all the so-called equality nowadays men of their era are typically the one's who have brought in the money to house and feed their families and have done so because that's their role. They're not the kind of men to show their feelings.

I've seen more emotion from Allan throughout this illness than I've seen in 50 years of marriage. I know he's frightened, I know he's worrying and I know he's very grateful for the care from me.

I hope you got to the garden centre and didn't spend a fortune!

Love Vee xxx

[Guest]

Hi Elaine,

I hope you got to the garden centre for lunch and that Pete was co-operating. I think it is very hard for men of this generation to talk about things, especially feelings and it must also be hard to engage with others in general chit chat because, lets face it, they have bigger things on their minds. It doesn't occur to them that this can be isolating and upsetting for you. Walking beside them on this journey is not fun, it's frightening and debilitating, frustrating at times because they don't suddenly become sweet and compliant because they are ill. That's why the forum is such a God send.

Who can say if talking about how you feel as a patient helps you face the inevitable or not? I don't know and no one has come back to tell us. Louis quite definitely did not want to go to groups with other "life limited" people and did not want people to visit him and see how weak and thin he was becoming, he thought it undignified. He stayed upstairs and just let me know if he wanted to see the people or not and from a very early stage we were advised to keep all visits short as fatigue soon sets in.

I have everything crossed that you all managed a pleasant lunch today. Try not to worry about visitors, they will understand that this is a difficult time. Don't neglect yourself in all of this, you need to keep your morale and strength up and you deserve quality time on your own and with friends, Pete can rest in another room if its more comfortable for him.

Much love to you both, thinking of you often

M xxx

[Veebee]

Marmalade. ..you expressed it far better than I did. You have such a lovely way with words. xxx

[Elaine123]

You are right Veebee I can always count on sound advice from M. Well the trip to the garden centre took place and we managed lunch. Pete was with us and enjoyed his meal but did not really take part in the conversation preferring just to eat. After lunch I wanted to get compost and two pots as his brother in law was there to help me with it but Pete got agitated and said he didn't want to do that and would go and sit at the entrance I immediately thought ok we will leave the compost and just go home. Then I thought no ...I need the compost and I cannot manage it on my own so yes sit and wait on us buying it. Selfish I know but now I have the compost I can get out into the garden and make a start and I get time when I am out there to just think and be me. I think I give in too easily and therefore I then allow Pete to withdraw from normal life and scurry home again and it's isolating both of us. If he was really fatigued and tired then I would do that but I think yesterday was just a case of we have finished our lunch lets go. We weighed him yesterday and he has put on four pounds so that's good as by the time he goes for chemo next week he may have put on another one or two which makes him a bit more physically able to handle the chemo. Ok better go and get out to the garden to prove that I did need the compost lol. Thanks for listening.

Elaine

X

[stepuha]

Great news on Pete's weight gain, Elaine. Fingers crossed, next week's chemo will go ahead.

When recovering from chemo I find it more and more difficult to concentrate on social chit chats. I think it may be due to 'chemo brain'. Concentration generally seems to be getting more difficult. And then there are some topics which just seem to be so unimportant in the grand scheme of things that I just switch off. That said you are absolutely right to carry on with as normal life as possible, with things that need to be done and that make you feel better. You can only look after Pete, if you look after yourself first.

Enjoy your gardening!

X

[Elaine123]

We had a good weekend the weather was warm enough to be able to sit out and Pete spent about three hours sitting out until his bottom was aching and forced him indoors to lie down. He has been eating well to try and up his weight as it is going back on so slowly. Think mostly because he has lost so much muscle. The family were all down yesterday but after a while you could see Pete getting a bit uptight with all the noise and toing and froing. He has had the last two weeks off chemo ...once for low blood platelets and this was his free week. He is desperate to get to the clinic on Wed to get his bloods taken and find out if chemo is going ahead this week or not. He has missed one week before but not two and it worries him. Cars info ran MOT today so fingers crossed it passes......I hope everyone had a good peaceful quiet weekend with no major upsets.

Elaine

X

[Veebee]

So nice that you've had sitting out weather. Yesterday we had rain but today's sunny but chilly.I hope Pete's bloods are ok for the chemo to go ahead and, on a lesser note, that that the MOT is painless for your purse! X

[Justamo]

How did chemo go for Pete today Elaine ? Hope it went ahead.

Peter's was fine and he is getting very blasé about it all.

Love, Mo

[Elaine123]

A bit late in posting this but it has been a tiring few days......going to clinic on Wednesday and discovered there had been a major processing factory fire on our route and the diversion was horrendous so arrived late eventually got seen by the Dr and she said that Pete had gained 4 lbs over the past two weeks so we were elated she then said his bloods were OK so chemo would go ahead on Thursday. Again we were delighted then as she scrolled through his results she said that his liver levels were on the way up they had went from below 20 to 31. Pete didn't seem to register what she had said so I asked her what this means and she said it is either the chemo is not working or his liver is unable to cope with the chemo....at that the usual panic was bubbling up inside me and I asked what happens now and she said we will check the levels again next week after this weeks chemo and then make a decision. My mind was racing by this time and I forgot all about asking further questions.....Pete still seemed unperturbed by this which I found a bit strange. As you all know how anxious he is that his chemo continues. After leaving the clinic I asked Pete how he felt about the news and it was obvious he didn't take it in as he thought since his chemo was arranged that the levels obviously wouldn't change anything. So I decided not to say anything further as I was in my usual panicking mode. Our daughter Karen had come from work to pick us up and the road diversion was the furthest thing from my mind and as we drove into Greenock at rush hour we suddenly came to a standstill it was at gridlock as the only diversion that we could take wasn't coping with the amount of traffic it took us three and a half hours before the snarl up was sorted to do the twenty minute journey we had left to get home. By this time we had been away over eight hours including being held up in the morning and Petes bottom only lasts about half an hour before it starts aching and he has to stand up. He was ill by the time we got home between the horrid painful bottom and his legs going all wobbly.

The thought of getting to chemo the next morning was looming large. So Thurs we left at ten am to get there for our twelve noon appt and arrived at half past eleven as the diversion was flowing smoothly we signed in and sat until after one when I went and enquirer if his chemo was held up only to be told that our slot had been changed to half past one but they had forgot to phone us about the change. I thought ok things happen and as it was nearly that time it wasn't too bad , but Petes chemo did not come up until 3.45pm and by that time his bottom was really playing up and he was in agony and he was tetchy and bordering on rude to everyone. My daughter arrived expecting us to be waiting on her only to find we now had to wait until after 8pm until his chemo finished so we still had to negotiate the horrid diversion but it was not as bad as the previous evening. He was shattered when we got home we were all tired and hungry and just exhausted our poor daughter had another hours journey to get home for work in the morning. I as still really unsettled about the liver levels so I emailed our fantastic nurses who explained everything in a manner I could understand which led me to make sense of it all. I am now just waiting to see what happens on Wed depending on whether his levels are up or down. With regards to this weeks chemo he was brilliant on Friday and he actually walked further than he has been doing. He is still sleeping as yet so I don't know if his usual Saturday and Sunday slump will happen.

Sorry for such a long post but I had to get it written down before I can put it all to the back of my mind. Once again I am indebted to our nurses for pulling me through another anxious time. I hope everyone has a good weekend .

Elaine

X

[Veebee]

Oh, Elaine that's a stressful couple of days for you all but you've got it off your chest and I hope you feel better for that. Hoping you and Pete have a relaxing, trouble free weekend.

Vee xxxx

[Justamo]

I'm so sorry to hear about two nightmare days one after the other. I saw the fire on STV and was aware of the horrific traffic problems but things like hospital appointments hadn't actually occurred to me - they will now. Thank God we've got this forum where we can let off steam.

I'm glad he had a good day on Friday - Peter stayed in bed for most of Friday, he had his chemo on Wednesday. He would normally be slumped in a chair today too, but he dragged himself up to the golf club because the Pro rang to say his buggy had come in !

Do you ever get the feeling that you would like a week or even a couple of days 'off' from cancer ? It really is a 24 hour job, and there's no time off. That remark will probably come back to haunt me now. I could delete it, but I can't unthink it.

Take care Elaine,

Love Mo

[Guest]

Hi Elaine, what a dreadful couple of days, I must have missed the issue with Pete's bottom... Louis could not sit anywhere for more than 20 minutes before becoming very uncomfortable so we used to have to pull over for him to stand up and walk around. His legs and tummy mostly. It seems ridiculous now but became normal at the time. Normality seems to shift in the light of this diagnosis. I hope am nights rest has helped Pete and that having had your exchange with the nurses you are feeling less anxious although I do appreciate that the anxiety never really goes, which is why Mo is absolutely right, you can't get a away from it. We all know what you mean Mo and have felt the same.

Hope you have a restful day

M xx

[Quickasyoucan]

Dad has bottom problems too one buttock only and nothing seems to really assist tho it does wax and wane. Best wishes to you Elaine and of course Pete.

[Elaine123]

Hi everyone Well a new week dawns ans a new problem has came with it. Talk about ups and downs. Pete is slowly turning yellow again I thought the other day outside that there was a slight tinge to his skin but we met a friend on Sunday when we were out and she came over yesterday when I was in the garden to say she was shocked to see Pete was yellow again. He got really angry when I mentioned that we go up to A&E and was determined he was not going as he said that he didn't see it. I phoned our specialist nurse at the local hospital and she looked up his latest blood tests and said as his levels were raised last week we will probably find that they are higher this week. I told her he is starting to go off food again....she thinks that his stent is becoming blocked and may need to be redone. She understood his reluctance to go up to the ward after the catalogue of errors last time and as he wouldn't get his stent done before Wednesday it may be best to see his consultant at the clinic then as his bloods will be taken and depending on the results he will decide what action to take. This has really dumped us again especially when he was feeling good and his weight was going up. So it doesn't look as if he will get chemo this week again. I just feel so vexed for him as he looked so down and weary yesterday. His colour does not look too bad indoors but when he goes outside it is really noticeable. Roll on Wednesday until we get some answers as the unknown is scarier as all sorts of thoughts go round and round your head. This bloody disease is relentless and changes so rapidly . I will post on Wednesday when we will hopefully know more.

Elaine

X

[Quickasyoucan]

Elaine I totally understand the up and down. Best to sort out the stent asap if it is blocked tho and I understand they can put a second stent inside the stent to unblock it relatively easily. Much better than the jaundice. I think in the case of the cancer it is best to look at the lesser of 2 evils. For example dad did not want to start taking antibiotics again but the alternative is an infection hospital or worse. If the stent is blocked relieving it will assist with all manner of things including appetite.

Sending all good wishes to you and Pete.

[sandraW]

Hi Elaine, sorry to hear the roller coaster is on the way down at the moment, such a shame when Pete was feeling better. Lets hope they can sort it for him soon, at least you already know you can see the consultant on Wednesday, and are not waiting for appointments. Hang on in there, and take care, love sandrax xx

[Proud Wife]

Oh Elaine, I can so relate to this and why Pete got so angry. I remember one day when my hubby had a fever and I said we'd have to go back to hospital. It was a bank holiday and he too was really angry. All he could say was I want one bloody day without hearing the word hospital. I sat there and cried and truly understood what he meant. I am sure Pete is probably really scared and denial is his coping mechanism.

My hubby had this habit of wearing really tight socks. So tight, his legs started to swell above the ankle band. I kept telling him he had to take the socks off. Did he listen? No. He was having chemo that day so all I did was have a quiet word with the chemo nurse, she then went up to him and raised the issue. Immediately he agreed to take the socks off. Funny how men don't want to listen to their wives when 99.999999% of the time we are right.

I wouldn't push it with Pete directly. If as you say it can't be done until tomorrow, I would just have a quiet word with the nurses and let them deal with it. I'm sure Pete will listen and accept his colour if they point it out and perhaps won't be so angry. Remember though my lovely, he's not being angry with you, he's quite rightly angry with PC.

Stay strong and keep us posted.

Sending you good luck (((vibes))) xx

[Veebee]

Hello Elaine so sorry to hear that Pete's on a dip at the moment and, of course, it affects your mood too. Please try not to worry too much and I'll look out for your update on Wednesday. Love Vee xxxx