Does anyone have any tips or bright ideas re being someone with cancer and also a carer.

[Sequoia]

In January of this year my husband and i had a really beneficial and relaxing trip to Penny Brohn but since then we have returned to what i can only describe as a minefield. Lets start with me. i was diagnosed with thyroid cancer in April 2009, had all the treatment but in Jan 2011 my bloods started rising and in Jan 2012 i found i had neck recurrence and mets to right hip. I am resistant to radioactive iodine which is the first port of call re treatment for thyroid cancer which doesn't help and also when i came to Penny Brohn my bloods had continued to rise so I was awaiting another PET scan. On my return from PB i was due to start a new job at a well known supermarket, In case you wonder why i took the job.., because they are few and far between and because when i got the job I wasn't sure what was happening with my bloods and being positive i thought i should go ahead with it on the grounds that there may be nothing. To summarise, back in March I was told that i now have activity in my lungs as well and also that i had activity showing in the brain on the PET but not CT. I went through a week thinking i had TC on the brain but it turned out to be a rare genetic condition called Lhermitte Duclos disease which is probably a symptom of Cowdens syndrome which in turn is probably responsibly for my thyroid cancer and is likely to make me at higher risk of some other cancers. I can say now this was heavy but this plus doing a new job and being picked up at every opportunity plus looking after a Dad with vascular dementia has been truly exhausting. I just started to feel slightly better but now I've got my next 3 monthly appt coming up plus all the appointments generated by the genetic aspect. Between 13th June and 19th July I have 7 appts to intend, one of which is for my Dad. There are things I've done which may be suggested but it feels like I've rambled long enough for the moment.

[Sequoia]

I should add that i have a brother in Ireland and a sister living about an hour away and in my hour of need I fully expected them to step up. This hasnt happened and I've had to accept that it isn't going to either without far too much emotional cost to me.

[Rosebud51]

that all sounds very challenging, I wish you all the very best. Try to use the wonderful services at Penny Brohn when ever you can - it really helps. There's a short (few minutes) video on utube The cancer Survivor movie, its inspiring.

[StickiVicki]

Can't you just tell your sister that she HAS to do something to help out with your father (I am assuming that you have the same father and are not half- or step- siblings that ignore that part, as with my nieces). They can't bury their heads in the sand any longer, they have to actually do something. Your father is not solely your responsibility, only a third. That sounds harsh, but your siblings have to take this on board. It is time for them to give back!

Can your husband help a bit more with his father-in-law at least? Do you have children who are old enough to take on some responsibility? Is there a Dementia society that could help, or is it all Alzheimer's? Have you thought of contacting Macmillan?

I guess you also need to look at whether you really need the job, or could you go part time or at least have regular hours. Your employment is covered by the Disability Discrimination Act, or whatever it is called, and they HAVE to make certain allowances. Contact Citizen's Advice and if necessary remember to document everything so you have evidence. Employers just might not realised that they are being difficult especially if they are very big and don't have a really personal interest in their personnel.

You need to remember to care for yourself first and put others second. This is not a normal way of thinking for many women but if you don't look after yourself first then you may not be able to help others at all if your health breaks down completely.

Vicki xxx

[mountainman]

Good morning Sequoia. What a wonderful and inspiring name, Yes you have to stand tall and strong to battle this situation. My thoughts are these. Life is really full of the most unexpected situations and under normal circumstances we can cope, bend, change and sway with the wind to cope. But, when things get tough and they are certainly getting tough for you now, we have to be especially strong. I can give no advice regarding the external situations you describe but what about You?

How are you inside? no, not the physical you, that's the part you are writing about above, no, the other part. The character of Sequoia, the part that knows how to laugh, that part that can relax, the part that makes the decisions on how the physical part copes.

It was my experience of Prostate Cancer that showed me the VITAL part that both diet and relaxing takes in the process of coping with these 'right orrible' situations! This is the wonderful legacy that Penny Brohn left us, She showed that to get the diet right, clean and useful, get the mind relaxed and working for us and that will fuel the Immune System which basically fights all of 'life's tissue issues' and strengthens the inner person.

I call these two parts, 'Me the Body' and 'Me the Person'. It is the body that has the cancer cells that if if allowed to roam unchecked can form tumours but it is the Person who has the will to fight, to laugh and to survive!

How are you sleeping? Remember, you have a huge amount of healing to do and deep rem sleep is another key. My problem with a Prostate Situation was the need to go to the loo every hour at the hight - that was just er difficult but as the surgeons did their bit and I listened to all the advice from PB and the Oncologists and the Radiotherapysts etc etc, everything settled down. Once I started sleeping, a sense of humour returned and I was able to laugh and fight again!

Oh, another point. Look at what drugs you are feeding you body, if any. Remember, if your body is having to deal with nicotine or caffeine or alcohol or sugar of even struggle to extract nutrients from processed food or vegetables grown in exhausted soils, your body is less able to do what it really needs to do now. The conversion of clean filtered water and nutrient rich food into white blood cells and body energy must by your FIRST provision. I recommend that you consider adding organic foodstuffs to your diet and also organic vegetable juice - as much as you can get. Tesco sells Organic Beetroot Juice which is easy to get and really good. Try and research this subject. Look on the PB Internet Shop for really good Recipe books on the subject.

You talk about exhaustion. Yes, I spent several years slowly slipping down into Exhaustion and was totally dumfounded to see how quickly I was able to stop and reverse the slide into exhaustion once I sorted the diet bit out and brought organic vegetable juice in. Remember to dilute the vegetable juices 50 / 50 with water.

Your Father will also benefit immensely if you persuade him to journey with you on the new diet. My 89 year old Mother lives with me and she is bright as a button. I leave her a glass of organic juice in the fridge every morning as I go to work and it is alway gone in the evening!

Sequoia, I wish you well on your journey. Stand tall, bend with the wind and try and be as positive as you can. (Look at some of my earlier posts for advise on Juicers)

Mountainman

[Sequoia]

Hi Rosebud, thanks for support, much appreciated but can you expand a little on the cancer survivor movie as when i checked there are quite a few.

Hi Sticki Vicki, yes my brother, sister and i are all full siblings. What you say about them I wholeheartedly agree with although take a look at the alzheimers society forum and it is littered with this kind of problem. In my family I am the caring one which was ok until i became ill (maybe it wasn't but thats what i did). Unfortunately Dad's diagnosis has come at the same time roughly as my own diagnosis of recurrence and mets and like a lot of people, my GP included i thought it was time to talk to my brother and sister. I did this and in my hour of need I honestly believed they would step up...., I was disappointed. What i have found to be the problem is that i need to keep badgering them, they don't come to me. With my brother it's distance which makes him drift plus not knowing what to do in terms of taking over. I can at least talk to him and he will do odd things. My sister only converses with me on very safe territory and never sees Dad (there is a bit of history but nothing serious or unpleasant like abuse). I got her on board with power of attorney paperwork but that was more trouble than it was worth. So, trying to keep the wonderful Penny Brohn ethos as far as possibly i have decided that as far as stress goes it causes more to me trying to get blood out of a stone than actually just doing it all myself.

Re my husband, he is brilliant, he does the minor diy for Dad and anything else he can, but he is 62 and working 55 hours a week on a factory floor which takes a load of pressure off me to work more than the 17 hours i already do. I've also just set up an arrangement which my Dad is delighted with where he will pay my son £10 to do an hours cleaning or other jobs as necessary. This helps my son who is on a low wage and also Dad feels that he's being useful too so it's a really good two way process.

I should also add that due to my brain tumour i have lost my driving licence until DVLA decide whether im fit enough to have one. When you live your life around having a car this is yet another irritation to deal with. I'll stop now and reply to Mountain man later.

Thanks everyone.

[dagshome]

Hi Sequoia, I'm pleased to see that you have had some very supportive replies. I had bladder cancer over 5 years ago from which I am now "cured". I did endless research into complementary & alternative medicine (CAM) and started a free advice line and website almost entirely for cancer and Alzheimer's. I am sure that diet, supplements & lifestyle played a huge part in my treatment, and keeping my 91 year old mother free from dementia type illness. I forward fact-sheets regarding these, so if you are at all interested let me know. Good health Dave

[Sequoia]

Hi Mountain Man, What a great post! What especially struck a chord with me in this post and what I have learnt a little of since having cancer but still have trouble practising especially when times seem exceptionally challenging is the need to deal with things in the right order and I'm right at the top of the list! It's all too easy if you are a caring person to immerse yourself in a situation like mine thinking what about Dad what does he need etc etc and not give a second thought to what the person providing that support may need, e.g me.

Also, my situation is a perfect indication of why the whole body ethos of PB is right and right again. Stress = poor sleep = poor eating and so it goes on.

Hi Dagshome, Thanks so much for your kind offer but really I have found all the answers i feel i need with Penny Brohn.